Left the doc's office a few hours ago. I already told a few loved ones that the new scan showed no growth. Not quite true. The increase in size is measured in an approximate number of millimeters. It works out to a curent rate of growth that will take over 5 years for any of the nodules in my lungs to double in size. The doc is going to pick 10 of the nodules and graph their changes in size from first CT scan last January through each of the 5 scans since then. I go back to see that graphing on Jan 11.
Jacki and I left his office, both I think in an absorbing mode. She went to work. I ran a couple errands and came home intending to get a few things done and go to a 6pm meeting. Instead, I have holed up in my cave feeling numb and unsocial with my phone ringer shut off. Have not talked with anyone for over 6 hours which is a near record for me. My emotions are in a slow eddy, swirling but I think going down no more.
I have tried to find others with my particular brand of cancer, "Metasticized Papillary Renal Carcinoma" for those who are technical. Wikipedia says there are about 2,500,000 new cancer diagnosis a year in the USA. Of those, 50,000 are new kidney cancer diagnosis. That is about 2% of all cancers. The doc says there are only 3000 or so new cases a year of my little specialty form of kidney cancer. I would really like to find even just one of those 3000 new patients.
Bill
Monday, December 7, 2009
My Creator
My Creator,
It is Monday morning and in a few minutes Jacki and I leave for the doc's office. I ask that you please go with us; I'll hold the door for you.
Bill
It is Monday morning and in a few minutes Jacki and I leave for the doc's office. I ask that you please go with us; I'll hold the door for you.
Bill
Saturday, December 5, 2009
CT scan blues
I like listening to the blues. If I listen, that seems to take care of having to feel them so much. Sometimes I get blue before the blues deserving event even happens, like today. My CT scan was Tuesday, my doc appt to see results is Monday when Jacki can be there too. So, as before each of my preceding CT scans, I get the CT scan blues in between the scan and the doc. The fear kicks up, the sad kicks in and I get diverted from enjoying a good day.
My back felt a little painfully tense waking up this morning. My head went instantly to, "Must be the tumor, tripled in size since last scan!" If a small cough or little wheeze comes out, then my head jumps into the lungs filling up with nodules conclusion. The frequency of such magnificent magnifying thinking spikes upward every six weeks when a few days separates CT scan and the doc.
On the other hand, I notice that since initial picture last January of my kidney tumor and lung nodules, ZERO growth has occurred in either. NONE! Including the 3 months before starting the everyday chemo pill, no growth at all in my cancer. So, maybe there is just no reason for the CT scan blues other than listening might prevent. So, here are the words to the first verse:
I got the cat scan blues.
Oh yess, I got the cat scan blues.
But as long as I hear them,
All I get is good news.
(harmonica break)
Sing it! I know you can hear it too. So, in a couple days I will let you in on the details of good news Monday.
Bill
My back felt a little painfully tense waking up this morning. My head went instantly to, "Must be the tumor, tripled in size since last scan!" If a small cough or little wheeze comes out, then my head jumps into the lungs filling up with nodules conclusion. The frequency of such magnificent magnifying thinking spikes upward every six weeks when a few days separates CT scan and the doc.
On the other hand, I notice that since initial picture last January of my kidney tumor and lung nodules, ZERO growth has occurred in either. NONE! Including the 3 months before starting the everyday chemo pill, no growth at all in my cancer. So, maybe there is just no reason for the CT scan blues other than listening might prevent. So, here are the words to the first verse:
I got the cat scan blues.
Oh yess, I got the cat scan blues.
But as long as I hear them,
All I get is good news.
(harmonica break)
Sing it! I know you can hear it too. So, in a couple days I will let you in on the details of good news Monday.
Bill
Tuesday, December 1, 2009
What's it mean . . .
. . . to be a man?
Where did they come from, the rules defining what is a man? Maybe some men do not grow up learning the same rules, but I did and I see the results of those rules in so many men around me.
Writing this blog over the past, wow, almost a year, has often been difficult. How much can I reveal here? How can I express what is really going on instead of lounging in much more comfortable intellect? Is it now okay for me to be scared? No, not in my life nor in my own head nor within the "rules" of being a man. Only in recent years have I noticed another view of scared, "courage is being afraid and walking through it anyway". Still, expressing scared is a very awkward and uncommon act for me. As a boy and to some extent now, ridicule is the expected response. The "rule" for me seems summed up as, "A real man ain't scared of nothin'"
So what about sad? Much as my Dad received, at age 7 I received a backhand and admonishment that, "Boys don't cry!" I saw other boys ridiculed for crying when injured. "Men can stand pain!" So I didn't cry. Exceptions? Once at 16 when Grandma died. Blubbering drunk sobbing at my 1st divorce. Okay, so maybe a few tears rolled every 9 years, otherwise they were stuffed down inside as I tried to feel nothing. Drugs helped numb. I cried not one whit at my own father's funeral, instead plotting how to get in the restroom by myself to get numb.
Mad was not okay in my home growing up. The man of the house can get mad and show it in what I now know is rage. Throw, hit, belittle, cut with verbal blades. I hear today that anger is a natural human response to pain, but growing up I learned from those older than me to go from pain or fear into rage in a split second. But, only the top dog gets to do that. That's the rule, passed down from one generation to the next. Control your woman with fear and hitting. Tie thumbs together, hang over a door to hold the boy still for application of a board to the back. A few generations back, that was okay, but each ensuing generation of men in my tree was a little bit less violent. We all knew at some level it was wrong, but knew no other way to avoid showing some, according to the rules, sissy emotion. Coming down the tree to me, it was 1978, I remember it well when I used a backhand on 3 occasions, lashing out at my first wife. That is what I learned to do with mad - part of the rule book for being a man. I have never hit again, but I did use a lot of drugs as a plug on scared, sad, and anger.
Talking about any of what I am attempting to write herein, was just simply not done. No one knows what goes on behind closed doors, but the same goings on were apparently going on behind many doors. Stuff mad, sad, scared, intil the dam bursts in a fit of rage. Or the burst floods a pit of despair or depression. Our all too low self esteem is pounded into us by each other from what, age 4 or 5.
The rules:
1. Do not show fear.
2. Do not show sad.
3. Do not begin to be mad because that might lead to rage.
4. Do not speak well of yourself because that is conceit.
5. Do not speak well of another guy lest he get a "big head".
6. Discount any compliment.
7. Compare yourself to others, measuring less than or better than.
8. Judge yourself harshly but build yourself up by belittling others.
The rules seem to go on and on. I could add to the list and so could you. But I want to know, WHO WROTE THE RULES? How long have we been ruled as men by standards of perfection that can only result in failure. Every good job seems followed by a but . . .
Maybe that's just me. Maybe it's not just men.
Even with cancer, I have thoughts that I SHOULD be more spiritual, or eat better, or exercise more, or on and on and on . . . My sponsor shares with me about not talking bad to myself. Turns out I have been hard on myself for about 52 years (since age 4 or 5). I ask my sponsees, "How's that workin' for ya?" I must ask myself that same question everyday to help me steer into thinking and talking well about you and about me. I like experiencing me more concerned with being kind than with being right. I like to acting like I love instead of just saying it. I would like to ask myself, "Is what I am about to do going to divide us apart or bring us together?" I relish my progress away from being emotionally stunted toward showing what I feel. Cry when I am sad. At least say it to myself when I am in fear. I like becoming able to recognise and express anger directly but without malice. I like accepting that I progress and grow and learn and love, and arrive where I really have always been . . . hu-man. You too!
Bill
Where did they come from, the rules defining what is a man? Maybe some men do not grow up learning the same rules, but I did and I see the results of those rules in so many men around me.
Writing this blog over the past, wow, almost a year, has often been difficult. How much can I reveal here? How can I express what is really going on instead of lounging in much more comfortable intellect? Is it now okay for me to be scared? No, not in my life nor in my own head nor within the "rules" of being a man. Only in recent years have I noticed another view of scared, "courage is being afraid and walking through it anyway". Still, expressing scared is a very awkward and uncommon act for me. As a boy and to some extent now, ridicule is the expected response. The "rule" for me seems summed up as, "A real man ain't scared of nothin'"
So what about sad? Much as my Dad received, at age 7 I received a backhand and admonishment that, "Boys don't cry!" I saw other boys ridiculed for crying when injured. "Men can stand pain!" So I didn't cry. Exceptions? Once at 16 when Grandma died. Blubbering drunk sobbing at my 1st divorce. Okay, so maybe a few tears rolled every 9 years, otherwise they were stuffed down inside as I tried to feel nothing. Drugs helped numb. I cried not one whit at my own father's funeral, instead plotting how to get in the restroom by myself to get numb.
Mad was not okay in my home growing up. The man of the house can get mad and show it in what I now know is rage. Throw, hit, belittle, cut with verbal blades. I hear today that anger is a natural human response to pain, but growing up I learned from those older than me to go from pain or fear into rage in a split second. But, only the top dog gets to do that. That's the rule, passed down from one generation to the next. Control your woman with fear and hitting. Tie thumbs together, hang over a door to hold the boy still for application of a board to the back. A few generations back, that was okay, but each ensuing generation of men in my tree was a little bit less violent. We all knew at some level it was wrong, but knew no other way to avoid showing some, according to the rules, sissy emotion. Coming down the tree to me, it was 1978, I remember it well when I used a backhand on 3 occasions, lashing out at my first wife. That is what I learned to do with mad - part of the rule book for being a man. I have never hit again, but I did use a lot of drugs as a plug on scared, sad, and anger.
Talking about any of what I am attempting to write herein, was just simply not done. No one knows what goes on behind closed doors, but the same goings on were apparently going on behind many doors. Stuff mad, sad, scared, intil the dam bursts in a fit of rage. Or the burst floods a pit of despair or depression. Our all too low self esteem is pounded into us by each other from what, age 4 or 5.
The rules:
1. Do not show fear.
2. Do not show sad.
3. Do not begin to be mad because that might lead to rage.
4. Do not speak well of yourself because that is conceit.
5. Do not speak well of another guy lest he get a "big head".
6. Discount any compliment.
7. Compare yourself to others, measuring less than or better than.
8. Judge yourself harshly but build yourself up by belittling others.
The rules seem to go on and on. I could add to the list and so could you. But I want to know, WHO WROTE THE RULES? How long have we been ruled as men by standards of perfection that can only result in failure. Every good job seems followed by a but . . .
Maybe that's just me. Maybe it's not just men.
Even with cancer, I have thoughts that I SHOULD be more spiritual, or eat better, or exercise more, or on and on and on . . . My sponsor shares with me about not talking bad to myself. Turns out I have been hard on myself for about 52 years (since age 4 or 5). I ask my sponsees, "How's that workin' for ya?" I must ask myself that same question everyday to help me steer into thinking and talking well about you and about me. I like experiencing me more concerned with being kind than with being right. I like to acting like I love instead of just saying it. I would like to ask myself, "Is what I am about to do going to divide us apart or bring us together?" I relish my progress away from being emotionally stunted toward showing what I feel. Cry when I am sad. At least say it to myself when I am in fear. I like becoming able to recognise and express anger directly but without malice. I like accepting that I progress and grow and learn and love, and arrive where I really have always been . . . hu-man. You too!
Bill
Wednesday, November 18, 2009
angry
I have been angry. Simmering beneath the surface of my consciousness. A few days ago, maybe a week, it bubbled to the surface through a crack called resentment. I did not express my anger directly, I just had a "justified" resentment. Justified resentment I am pretty sure means I get to focus my own ire at someone else in the form of blaming. Hocus pocus, change the focus, get off me and onto someone else what is really going on inside my own head. In early recovery I read, "What about the justified resentments? We find they are best left to those more qualified to handle them."
Often I have described, when asked "how do you feel?", how my emotions run the full gamut every day. Mad, sad, glad, scared, up and down, sometimes even despair and hopeless. I cannot remember the last time I felt hopeless before Cancer. Physically vibrant, tired, sluggish, in action or sitting on my butt (laurels?)give me the variety (roller coaster?). Those answers to "how do you feel" may well be honest answers for most humans on any given day. For me, it has taken cancer to help me express and see the rest of what has always been there - emotions that seem not okay to feel. I learned as a kid that anger is not okay for anyone except my Dad. Not blaming him here, he got it from his dad, who got it from his dad, and his dad . . . a gift that keeps on giving.
I come from a line of men on one side who hit, throw, and verbally assault to deal with anger. The men I grew up with who did not throw or hit or cut with words? Well, they stuffed it. Down and in not up and out. When I stuff it, it percolates into passive agressive thinking and behavior, or it mutates into depression. The last time I hit was 1978. Wife #1. That is a pain on my soul I feel to this day. Since it was not okay to be angry as a kid, and it came out so ghoulishly as a young man, I learned to stuff it. Part of the function of my drug use and abuse for 26 years was to keep a lid on the slow simmer of emotions stuffed. Sad, scared, mad - stuffed.
So, now I have been in recovery for near 16 years. No drugs. A little better at expressing emotions instead of stuffing. I can cry fairly readily and say "I am sad." Even scared is within my verbal skills to express. But anger is still very awkward and often squeezed into a different costume.
I feel anger about this thing trying to grow inside me and grab what seems everything so dear to me. Anger at the medicine (solution?) that near incapacitates me several hours of every day. Drags me down much of the rest of my day - easily tire, I am not as sharp or quick mentally. EVERY day I wake knowing I get to take poison guaranteed to rule much of my day. It pisses me off that I also must see that same poison as "my friend"!
Of course I feel sad about the many changes in my life and my loved one's lives. The impact on Jacki is profoundly stressful and she too experiences an emotional roller coaster. The coaster mostly is not extreme up and down, it is just continuously there in the background. It wears. I know that she contains her swings to protect me and I contain my swings to protect her. Maybe neither of us needs that much protection. We must not just stuff it, because that takes too great a toll.
My sponsor said underneath this anger is fear, My first thought was that he was full of BS and that I fear very little about this whole scenario around having cancer. Now, as his laser eye spotted it, I recognize and see the fears. My kind of cancer cells are fatal and there exists no cure as of this moment in medical time. I fear what that will do to Jacki, my daughter and those close in my life. My Mom would be hit so hard by a 2nd child going before her.
I fear being laughed at for feeling and expressing such fear and anger. "There goes Bill again talking about the cancer." I am angry about not getting to work and earn and spike my income beyond what SS pays me. I resent the wobbly physical symptom I get every day when I cannot drive and stairs are difficult. What about my persona of being Bill G, the strong, kind, loving, even, solid guy who helps and sponsors and speaks inspirationally. I am still all that, AND I get to be human including angry amd afaid. I am even going to be pissed off if any comments come telling me to push it back down, get it together and suck it up!
Intellectually I understand that I am grieving: anger, denial, bargaining - what are the other two? I am going through them too. Throw in some massive amount of self centered - thinking about me and not even asking about you. Inside it feels like a big jumbled up mess, a quagmire that I mostly keep tucked in what I think is out of sight. Yet some of you see it. You ask and I give canned answers. I must let some this stuff out, vomit it out if I have to, because what I have been doing is too hard, too tough and too unrealistic of expectations on myself. And to cover the truth is distancing from you and too much work for me. So let's not tip toe through the tulips. Be a little more human and real about what this is like. Stop comparing me and mine to you and yours - it never comes out even.
God's gonna take care of all of this. Maybe after writing this, talking, praying, I can move into faith that His will is pretty good.
I'm gonna post this before I chicken out and start rationalizing it all away.
Bill
Often I have described, when asked "how do you feel?", how my emotions run the full gamut every day. Mad, sad, glad, scared, up and down, sometimes even despair and hopeless. I cannot remember the last time I felt hopeless before Cancer. Physically vibrant, tired, sluggish, in action or sitting on my butt (laurels?)give me the variety (roller coaster?). Those answers to "how do you feel" may well be honest answers for most humans on any given day. For me, it has taken cancer to help me express and see the rest of what has always been there - emotions that seem not okay to feel. I learned as a kid that anger is not okay for anyone except my Dad. Not blaming him here, he got it from his dad, who got it from his dad, and his dad . . . a gift that keeps on giving.
I come from a line of men on one side who hit, throw, and verbally assault to deal with anger. The men I grew up with who did not throw or hit or cut with words? Well, they stuffed it. Down and in not up and out. When I stuff it, it percolates into passive agressive thinking and behavior, or it mutates into depression. The last time I hit was 1978. Wife #1. That is a pain on my soul I feel to this day. Since it was not okay to be angry as a kid, and it came out so ghoulishly as a young man, I learned to stuff it. Part of the function of my drug use and abuse for 26 years was to keep a lid on the slow simmer of emotions stuffed. Sad, scared, mad - stuffed.
So, now I have been in recovery for near 16 years. No drugs. A little better at expressing emotions instead of stuffing. I can cry fairly readily and say "I am sad." Even scared is within my verbal skills to express. But anger is still very awkward and often squeezed into a different costume.
I feel anger about this thing trying to grow inside me and grab what seems everything so dear to me. Anger at the medicine (solution?) that near incapacitates me several hours of every day. Drags me down much of the rest of my day - easily tire, I am not as sharp or quick mentally. EVERY day I wake knowing I get to take poison guaranteed to rule much of my day. It pisses me off that I also must see that same poison as "my friend"!
Of course I feel sad about the many changes in my life and my loved one's lives. The impact on Jacki is profoundly stressful and she too experiences an emotional roller coaster. The coaster mostly is not extreme up and down, it is just continuously there in the background. It wears. I know that she contains her swings to protect me and I contain my swings to protect her. Maybe neither of us needs that much protection. We must not just stuff it, because that takes too great a toll.
My sponsor said underneath this anger is fear, My first thought was that he was full of BS and that I fear very little about this whole scenario around having cancer. Now, as his laser eye spotted it, I recognize and see the fears. My kind of cancer cells are fatal and there exists no cure as of this moment in medical time. I fear what that will do to Jacki, my daughter and those close in my life. My Mom would be hit so hard by a 2nd child going before her.
I fear being laughed at for feeling and expressing such fear and anger. "There goes Bill again talking about the cancer." I am angry about not getting to work and earn and spike my income beyond what SS pays me. I resent the wobbly physical symptom I get every day when I cannot drive and stairs are difficult. What about my persona of being Bill G, the strong, kind, loving, even, solid guy who helps and sponsors and speaks inspirationally. I am still all that, AND I get to be human including angry amd afaid. I am even going to be pissed off if any comments come telling me to push it back down, get it together and suck it up!
Intellectually I understand that I am grieving: anger, denial, bargaining - what are the other two? I am going through them too. Throw in some massive amount of self centered - thinking about me and not even asking about you. Inside it feels like a big jumbled up mess, a quagmire that I mostly keep tucked in what I think is out of sight. Yet some of you see it. You ask and I give canned answers. I must let some this stuff out, vomit it out if I have to, because what I have been doing is too hard, too tough and too unrealistic of expectations on myself. And to cover the truth is distancing from you and too much work for me. So let's not tip toe through the tulips. Be a little more human and real about what this is like. Stop comparing me and mine to you and yours - it never comes out even.
God's gonna take care of all of this. Maybe after writing this, talking, praying, I can move into faith that His will is pretty good.
I'm gonna post this before I chicken out and start rationalizing it all away.
Bill
Saturday, November 14, 2009
No Idea
I think last post I said we are tiling two rooms in our house. I had NO IDEA of the real amount of work and displacement that entailed. Our stuff, two rooms full of stuff, was outside on our back patio for 7 days. We had help moving stuff out and then moving it back in. We had help tearing up the old carpeting (dirty, nasty stuff carpet - it is good for holding dirt and . . . ). I did shop for tile by myself (saltillo tile) but had help moving it after the delivery, stacking it in convenient places for the help who actually laid the tile. Smear sticky stuff called thin set on the bare concrete floor, set each tile, keep the lines straight and each tile set the same depth. I was the gopher/supervisor/project manager.
Another day of grouting between the tiles, another day to apply three coats of gloss sealer, let it thoroughly dry. Another day to give it one more coat of gloss. Next day finally moving stuff indoors and unpacking boxes of small stuff. The next day it rained. Whew!!! Thank you God. The tile is beautiful, and it feels extra good to me because it is the first big project I have been part of since being diagnosed.
I got tired each morning after a couple hours working, took a break, work a little more. The feed everyone lunch, work a little more and then take my friend, the little white pill. Several days the was someone here I could trust while I chilled and dozed upstairs, and a couple days I just sent everybody home at `about 1:30.
Two mornings toward the end, I awoke before 5:30am and got moving, planning the workers day to make the most of the newcomer helpers we paid. Almost all involved were in our exctended cirle of recovering addicts. Several friends and sponsees volunteered and some we paid just because we could and they needed to earn. Sorry to go on and on about tiling a couple floors, but maybe it gives you a sense of the "going on and on" of the project. I had NO IDEA!!
Today Jacki and I attended two separate services for friends recently deceased. First of all, these fellow drug addicts died clean. At each gathering were about 100other clean addicts. I probably gave/received 200 hugs today. Doctors say we need 4hugs a day to stay healthy - my cancer's gonna be cured at this hugging rate. Sort of the 12 step version of "laying on of hands" healing.
One of the dead/passed/crossed over was a cancer victim - leukemia - after three years of chemo and radiation. I know she was worn out, tired and in such regular pain that it had to be a relief to finally go. Toward the end, she insisted on detoxing from all the pain killers doctors had her taking. She wanted to be clear headed, and then she touched many in those last few days. She was the one who soon after my diagnosis called me out of the blue and shared dealing with cancer experience. She related to my fear, sadness, anger, and even the gratitude for life lived so sweetly. She is the one who gave me the gift of knowing chemo is my friend. Thank you Andrea!
The other service was for my friend Bill. I love him still. His last initial was G, just like me. So in our recovery community there were two Bill G's. He and I called each other OBG - Other Bill G. When the initial news spread of his death, many thought it was me. He was a large, kind, gentle and loving man who was always amazed that so many cared for him. He leaves a legacy of love amongst us, and I miss him.
The thing about this death stuff is that I have no sense of mine being any nearer now than 10 months ago. Still no felt symptoms of the cancer, only of the chemo pill. I think mostly of life and living with so many who love me - far more than I realized BC. Today, I experienced two memorial services. Both were clean recovering addicts seeking spiritual growth. Their paths of seeking were from differing directions of belief and faith, but I say they were headed toward the same ending - a closer contact with God at the source of all the love we experience on this planet. Some call it heaven. That's where Bill and Andrea are now, and it is where I will go and you will go and we'll all have a meeting. See you there. Count on it!
OBG
Another day of grouting between the tiles, another day to apply three coats of gloss sealer, let it thoroughly dry. Another day to give it one more coat of gloss. Next day finally moving stuff indoors and unpacking boxes of small stuff. The next day it rained. Whew!!! Thank you God. The tile is beautiful, and it feels extra good to me because it is the first big project I have been part of since being diagnosed.
I got tired each morning after a couple hours working, took a break, work a little more. The feed everyone lunch, work a little more and then take my friend, the little white pill. Several days the was someone here I could trust while I chilled and dozed upstairs, and a couple days I just sent everybody home at `about 1:30.
Two mornings toward the end, I awoke before 5:30am and got moving, planning the workers day to make the most of the newcomer helpers we paid. Almost all involved were in our exctended cirle of recovering addicts. Several friends and sponsees volunteered and some we paid just because we could and they needed to earn. Sorry to go on and on about tiling a couple floors, but maybe it gives you a sense of the "going on and on" of the project. I had NO IDEA!!
Today Jacki and I attended two separate services for friends recently deceased. First of all, these fellow drug addicts died clean. At each gathering were about 100other clean addicts. I probably gave/received 200 hugs today. Doctors say we need 4hugs a day to stay healthy - my cancer's gonna be cured at this hugging rate. Sort of the 12 step version of "laying on of hands" healing.
One of the dead/passed/crossed over was a cancer victim - leukemia - after three years of chemo and radiation. I know she was worn out, tired and in such regular pain that it had to be a relief to finally go. Toward the end, she insisted on detoxing from all the pain killers doctors had her taking. She wanted to be clear headed, and then she touched many in those last few days. She was the one who soon after my diagnosis called me out of the blue and shared dealing with cancer experience. She related to my fear, sadness, anger, and even the gratitude for life lived so sweetly. She is the one who gave me the gift of knowing chemo is my friend. Thank you Andrea!
The other service was for my friend Bill. I love him still. His last initial was G, just like me. So in our recovery community there were two Bill G's. He and I called each other OBG - Other Bill G. When the initial news spread of his death, many thought it was me. He was a large, kind, gentle and loving man who was always amazed that so many cared for him. He leaves a legacy of love amongst us, and I miss him.
The thing about this death stuff is that I have no sense of mine being any nearer now than 10 months ago. Still no felt symptoms of the cancer, only of the chemo pill. I think mostly of life and living with so many who love me - far more than I realized BC. Today, I experienced two memorial services. Both were clean recovering addicts seeking spiritual growth. Their paths of seeking were from differing directions of belief and faith, but I say they were headed toward the same ending - a closer contact with God at the source of all the love we experience on this planet. Some call it heaven. That's where Bill and Andrea are now, and it is where I will go and you will go and we'll all have a meeting. See you there. Count on it!
OBG
Tuesday, November 3, 2009
During
I do not think I have blogged during my afternoon twilight zone funky period. Everyday I take the chemo pill and a few minutes later the effects start coming on. At this moment I am 40 minutes in so this is prime "peak" time.
Phone call, so now it is about 55 minutes in. The call ended 10 min ago but I forgot. My fingers don't want to type - they are slower than usual. My eyes feel like when you pull back on the skin around them wondering what you would look like with plastic surgery.. I wobbled when I got out of my chair a bit ago. It is not a good time to go upstairs and for sure I must not drive. My hand keeps going to my forehead to press firmly and push backward. It feels a little good to press and push back, but more it is more like necessary. In a few minutes I will need to get horizontal for awhile. I may or may not sleep, but horizontal is required.
That will take me about 2 or 2 1/2 hrs into it and then it is a gradual process of these minor symptoms decreasing over the next two hours so by about 5 p,m I will be able to drive, converse well and be ready to be active. Today I am transplanting some flowers and cacti.
Meanwhile our home is a wreck with stuff moved and stacked to clear our office for laying tile after the carpet damage. The tile was delivered today and I have help coming in the morning to put sealer on the tiles before laying tile on Saturday.
Last night I was at a men's recovery meeting. Several new guys shared "from the heart" about the huge mess they are in, which is fine, they need to get it out. We can all identify with making a mess of our lives. Many meetings go like that - new guys, then some more experienced guys maybe talking about problems but then solutions other than getting loaded or saying f**k this and running like we always did. Instead another new guy shared and went on and on. About ten minutes of pointless spewing about nothing specific. I kept waiting for someone to politely ask him to stop, "Your time is up."
We talk about sharing the message not the mess. I personally felt taken hostage. Other guys chance to share dwindled. So, finally, I spoke resectfully as I could asking him to, "stop, your time is up" I am known to do that, and I always wonder why me? Do other members really want to let someone go on and on about their mess? We ask at beginning of every meeting to "Please limit your sharing to 3 to 5 minutes." Do we not mean that? Are we still afraid to speak up for ourselves?
One of the very impressive aspects of a meeting for me has always been a subjective feeling seemingly "in the air". As I have studied our literature over the years, I have noticed a phraes in our books mentioned I think 12 times: "Atmosphere of Recovery." That is a treasure to me in my recovery. It is the respect of one addict sharing and all others in the room listening. It is the "sharing the time" of sharing so that most if not all in the room have a chance to talk and be listened to. Addicts just do not do that. Most often we are busy thinking about ourselves and listening to the chatter in our own heads.
That is a big why for having our meetings - most of an hour out of own heads and maybe hearing the message of how to stay clean and find a new way to live.
There, it is almost two hours since taking the pill, and I functioned well enough to write the above. Thanks for stepping out of your own head long enough to read. You ever step out of your own head and watch yourself think? It can be quite entertaining. Smile!
Bill
Phone call, so now it is about 55 minutes in. The call ended 10 min ago but I forgot. My fingers don't want to type - they are slower than usual. My eyes feel like when you pull back on the skin around them wondering what you would look like with plastic surgery.. I wobbled when I got out of my chair a bit ago. It is not a good time to go upstairs and for sure I must not drive. My hand keeps going to my forehead to press firmly and push backward. It feels a little good to press and push back, but more it is more like necessary. In a few minutes I will need to get horizontal for awhile. I may or may not sleep, but horizontal is required.
That will take me about 2 or 2 1/2 hrs into it and then it is a gradual process of these minor symptoms decreasing over the next two hours so by about 5 p,m I will be able to drive, converse well and be ready to be active. Today I am transplanting some flowers and cacti.
Meanwhile our home is a wreck with stuff moved and stacked to clear our office for laying tile after the carpet damage. The tile was delivered today and I have help coming in the morning to put sealer on the tiles before laying tile on Saturday.
Last night I was at a men's recovery meeting. Several new guys shared "from the heart" about the huge mess they are in, which is fine, they need to get it out. We can all identify with making a mess of our lives. Many meetings go like that - new guys, then some more experienced guys maybe talking about problems but then solutions other than getting loaded or saying f**k this and running like we always did. Instead another new guy shared and went on and on. About ten minutes of pointless spewing about nothing specific. I kept waiting for someone to politely ask him to stop, "Your time is up."
We talk about sharing the message not the mess. I personally felt taken hostage. Other guys chance to share dwindled. So, finally, I spoke resectfully as I could asking him to, "stop, your time is up" I am known to do that, and I always wonder why me? Do other members really want to let someone go on and on about their mess? We ask at beginning of every meeting to "Please limit your sharing to 3 to 5 minutes." Do we not mean that? Are we still afraid to speak up for ourselves?
One of the very impressive aspects of a meeting for me has always been a subjective feeling seemingly "in the air". As I have studied our literature over the years, I have noticed a phraes in our books mentioned I think 12 times: "Atmosphere of Recovery." That is a treasure to me in my recovery. It is the respect of one addict sharing and all others in the room listening. It is the "sharing the time" of sharing so that most if not all in the room have a chance to talk and be listened to. Addicts just do not do that. Most often we are busy thinking about ourselves and listening to the chatter in our own heads.
That is a big why for having our meetings - most of an hour out of own heads and maybe hearing the message of how to stay clean and find a new way to live.
There, it is almost two hours since taking the pill, and I functioned well enough to write the above. Thanks for stepping out of your own head long enough to read. You ever step out of your own head and watch yourself think? It can be quite entertaining. Smile!
Bill
Tuesday, October 27, 2009
Kickin' my butt
This stuff is kickin' my behind the past few days. It is 7:45 in the evening and I still have cloud brain and wobble legs. Odd except I was an hour and a half late taking the little white pill today. Still, the afternoon twilight zone has stretched into 3 1/2 to 4 hours on Sun, Mon, and today.
Toilet shopping. Ever go toilet shopping? With the water heater bust last week and the consequent ruined carpet, we have decided to replace the carpet with tile to match the rest of downstairs. Long as we are at home improvements, we are replacing both our slow flushing, high water use toilets. So, I swear, I was in a Home Depot today talking with two sales people about how many golf balls or full rolls of toilet paper each toilet brand will flush. I'm not giving you a load of crap, it's true.
One brand will flush ten (10) golf balls in one flush. Supposedly that's just a drop in the bucket. Maybe they were just giving me the run around and besides, none of those toilets come in brown, just white. Wipe off that smile now, what do you think this is, a stream of random thoughts swirling down through the porcelain bowl of life? But now today's running around has wiped me out so I'm gonna stop. I am buying a package of golf balls though - just for research.
Shane that BS was just for you.
Getting the work done. The hardest part will be moving our stuff out of our office to make way for tile laying. Jacki's desk is huge, and we both have tons of paper and little treasures in their spots. Getting that part done reminds me of a book called Undaunted Courage. The book is about the Lewis & Clark expedition (great book BTW) and moving our stuff seems expeditionary. Okay, okay, one item at a time, one treasure tucked into one box at a time. The actual DIY work is being offered by skilled friends in our recovery network. They are the real treasures, and I hope they never move.
Bill
Toilet shopping. Ever go toilet shopping? With the water heater bust last week and the consequent ruined carpet, we have decided to replace the carpet with tile to match the rest of downstairs. Long as we are at home improvements, we are replacing both our slow flushing, high water use toilets. So, I swear, I was in a Home Depot today talking with two sales people about how many golf balls or full rolls of toilet paper each toilet brand will flush. I'm not giving you a load of crap, it's true.
One brand will flush ten (10) golf balls in one flush. Supposedly that's just a drop in the bucket. Maybe they were just giving me the run around and besides, none of those toilets come in brown, just white. Wipe off that smile now, what do you think this is, a stream of random thoughts swirling down through the porcelain bowl of life? But now today's running around has wiped me out so I'm gonna stop. I am buying a package of golf balls though - just for research.
Shane that BS was just for you.
Getting the work done. The hardest part will be moving our stuff out of our office to make way for tile laying. Jacki's desk is huge, and we both have tons of paper and little treasures in their spots. Getting that part done reminds me of a book called Undaunted Courage. The book is about the Lewis & Clark expedition (great book BTW) and moving our stuff seems expeditionary. Okay, okay, one item at a time, one treasure tucked into one box at a time. The actual DIY work is being offered by skilled friends in our recovery network. They are the real treasures, and I hope they never move.
Bill
Wednesday, October 21, 2009
Short one today?
We'll see. I have not been writing as regularly as before - each month seems to taper off from the previous. Yesterday was my 6 week since the last scan checkup. He wants to press on my lower belly, and it just tickles so much I don't think he gets a very good feel. He gave me technical terms for some of my minor symptoms-they are all minor but cumulatively they suck. I don't remember the terms but it was somehow comforting to know they have occurred enough in others to warrant a name.
Anyway, the checkup was positive as were the blood test results they called me with today. Let me tell ya, Sarah the nurse there put that needle in my arm so smoothly that I had to ask if it was in,
I could go on here about what seems a myriad of little side effects, but that feels like whining. I will tell you that limitations the side effects put on my life are depressing. My routine, established the hard way after fighting it, is good mornings, twilight zone wobbly afternoons after the pill, and then a good evening and tuckered out about 10pm. If I try to vary much from that routine, I pay a price for a couple days, so . . .
This morning after Jacki left I could hear water running slowly through pipes. Slower than a running toilet, faster than a trickle. I tracked it down. Water at a fast drip seeping from the bottom of our water heater. I have seen this before and I know what must be done. So, my next thought was "How do I fit this around my mandatory routine?" Much of the rest of the morning I spent sopping up water, sucking it out of the carpet, and finding a duplicate heater to fit the explicit size requirements of the space where it must fit. It will be available in the morning, and I have a skilled guy who will install it for $50. Total cost then is a bit over $310. Cold showers.
Money. I learned yesterday the group rates from my ex employer, which I still get through COBRA, nearly double as of the 1st of November. $948 a month for a man between 56 and 59. One of the very early actions Obama took in office was to subsidize COBRA payments for people who lost their jobs. Instead of $948, I am responsible for $331 per month. Of course, as of Nov 1st a new deductible cycle begins for a few thousand. The entity I distrust the most is the insurance company. What possible right do they have to almost double rates?
I was a headhunter in the health insurance industry for 3 years. I worked on many sales person positions that included compensation from $100,000 to near $1,000,000 per year. Sales people! During those 3 years the CEO of one of the 3 largest Insurance companies received a bonus of over $1,000,000,000. Count those zeroes. Billion. There are software companies that specialize in ER, ICU, maternity, admissions, on and on, all with a different software, none of which will talk to the other software. All of those specialized software companies have sales people and Executives, all making six figures or more. I talked with hundreds of those people and would occasionally ask them about patients. None of them see patients and rarely hear anything about what impact their product has on what this is all supposedly all about. I did hear a great deal of talk, like, 100% of those people, about money. When looking at almost any position with direct patient contact and many many supporting roles, I always heard about patients.
Did I mention the hundreds of positions in the insurance industry whose only reason for existing is to decrease the amount of money doctors, nurses and health care professionals receive and even positions focused solely on making every effort to reduce the insurance benefits paid for health care we do receive. Even more extreme: every insurance company has positions dedicated to going back over claims paid to try to find where too much was paid and get it back from the patient. I'm not making any of this up, nor exaggerating - insurance companies are about pure unadulterated greed. After 3 years, I became aware that the industry is just plain slimy greed. Maybe it started as a way to get more people covered, but it became infected much like big banks. Billion dollar bonus - where oh where does that money come from? What do cancer victims with no coverage do?
I changed to the oil industry where at least there is little doubt what they are about. However, instead I found people like geologists who loved rocks when little and now get to learn about them for a living.
In about a year my COBRA coverage will run out. 6 months later Medicare will kick in. I I am really scared about what that 6 months will do to our ability to get medical care and the financial hit that may well happen.
Wow! I could go on and on, but the bottom line is I am embarrassed about how our great nation allows insurance entities to determine who gets what care. We can do better. Our nation's moral fiber demands that we must.
Bill
Anyway, the checkup was positive as were the blood test results they called me with today. Let me tell ya, Sarah the nurse there put that needle in my arm so smoothly that I had to ask if it was in,
I could go on here about what seems a myriad of little side effects, but that feels like whining. I will tell you that limitations the side effects put on my life are depressing. My routine, established the hard way after fighting it, is good mornings, twilight zone wobbly afternoons after the pill, and then a good evening and tuckered out about 10pm. If I try to vary much from that routine, I pay a price for a couple days, so . . .
This morning after Jacki left I could hear water running slowly through pipes. Slower than a running toilet, faster than a trickle. I tracked it down. Water at a fast drip seeping from the bottom of our water heater. I have seen this before and I know what must be done. So, my next thought was "How do I fit this around my mandatory routine?" Much of the rest of the morning I spent sopping up water, sucking it out of the carpet, and finding a duplicate heater to fit the explicit size requirements of the space where it must fit. It will be available in the morning, and I have a skilled guy who will install it for $50. Total cost then is a bit over $310. Cold showers.
Money. I learned yesterday the group rates from my ex employer, which I still get through COBRA, nearly double as of the 1st of November. $948 a month for a man between 56 and 59. One of the very early actions Obama took in office was to subsidize COBRA payments for people who lost their jobs. Instead of $948, I am responsible for $331 per month. Of course, as of Nov 1st a new deductible cycle begins for a few thousand. The entity I distrust the most is the insurance company. What possible right do they have to almost double rates?
I was a headhunter in the health insurance industry for 3 years. I worked on many sales person positions that included compensation from $100,000 to near $1,000,000 per year. Sales people! During those 3 years the CEO of one of the 3 largest Insurance companies received a bonus of over $1,000,000,000. Count those zeroes. Billion. There are software companies that specialize in ER, ICU, maternity, admissions, on and on, all with a different software, none of which will talk to the other software. All of those specialized software companies have sales people and Executives, all making six figures or more. I talked with hundreds of those people and would occasionally ask them about patients. None of them see patients and rarely hear anything about what impact their product has on what this is all supposedly all about. I did hear a great deal of talk, like, 100% of those people, about money. When looking at almost any position with direct patient contact and many many supporting roles, I always heard about patients.
Did I mention the hundreds of positions in the insurance industry whose only reason for existing is to decrease the amount of money doctors, nurses and health care professionals receive and even positions focused solely on making every effort to reduce the insurance benefits paid for health care we do receive. Even more extreme: every insurance company has positions dedicated to going back over claims paid to try to find where too much was paid and get it back from the patient. I'm not making any of this up, nor exaggerating - insurance companies are about pure unadulterated greed. After 3 years, I became aware that the industry is just plain slimy greed. Maybe it started as a way to get more people covered, but it became infected much like big banks. Billion dollar bonus - where oh where does that money come from? What do cancer victims with no coverage do?
I changed to the oil industry where at least there is little doubt what they are about. However, instead I found people like geologists who loved rocks when little and now get to learn about them for a living.
In about a year my COBRA coverage will run out. 6 months later Medicare will kick in. I I am really scared about what that 6 months will do to our ability to get medical care and the financial hit that may well happen.
Wow! I could go on and on, but the bottom line is I am embarrassed about how our great nation allows insurance entities to determine who gets what care. We can do better. Our nation's moral fiber demands that we must.
Bill
Monday, October 12, 2009
Real men
400 guys in one room laughing, hugging, greeting , meeting, welcoming and sharing. Honest, kind, gentle as well as boisterous, raucous and bawdy. Men from different creed, religions, ages, races, sexual identities, states and countries. The unusual part, at least in my experience was very little judging, intolerance or gossip. No macho strut or one upmanship The focus was on similarities and recovery from the disease of addiction via a spiritual path. The food was pretty good too.
Traveled to San Diego for the event in an RV with 5 other guys who I already knew but know better now. Got along the whole trip.
The men I know in recovery came from all sorts of family or lack thereof, experiences. Many of us grew up with some degree of domestic violence, sexual abuse, incest or rape. I often hear men who first used drugs with parents as early as 7 or 8 years old. Many grew up with criminal role models. Amongst us are some who grew up to perpetrate those experiences on others, and many who have done time in jail and/or prison.
The common experience among all of us is that for whatever reason,or no reason, we became drug addicts. Some via alcohol or marijuana or speed or heroin or ecstasy or acid or tulenol, seconal, or anything at all. I sponsored a younger guy who liked to steal several packets of Coriciden, take all the pills at once and come to in the emergency room.
Such men are my comrades in recovery, and such men comprised the 400 at the Men's Spiritual Retreat of my weekend. I saw miracles because my eyes were open and I noticed. Men with from 43 years to just a few days clean. In recovery we grow up and out of low self esteem, self sabotage, rage and disrespect for the gift life. Our relationships are mended and we learn how to build new and healthy relationships with our friends, brothers and sisters, children, parents and we become good husbands. Cops can follow us and we don't have to worry about outstanding warrants. We become useful, productive and valuable members of society. And, we just don't use drugs anymore, at all.
Cancer? Yes I.ve got it. A nasty form I hear from the docs. And I believe in miracles - I see them all around. God is alive and active, loving and caring, and He has always had my back. God can't do what?
Bill
Traveled to San Diego for the event in an RV with 5 other guys who I already knew but know better now. Got along the whole trip.
The men I know in recovery came from all sorts of family or lack thereof, experiences. Many of us grew up with some degree of domestic violence, sexual abuse, incest or rape. I often hear men who first used drugs with parents as early as 7 or 8 years old. Many grew up with criminal role models. Amongst us are some who grew up to perpetrate those experiences on others, and many who have done time in jail and/or prison.
The common experience among all of us is that for whatever reason,or no reason, we became drug addicts. Some via alcohol or marijuana or speed or heroin or ecstasy or acid or tulenol, seconal, or anything at all. I sponsored a younger guy who liked to steal several packets of Coriciden, take all the pills at once and come to in the emergency room.
Such men are my comrades in recovery, and such men comprised the 400 at the Men's Spiritual Retreat of my weekend. I saw miracles because my eyes were open and I noticed. Men with from 43 years to just a few days clean. In recovery we grow up and out of low self esteem, self sabotage, rage and disrespect for the gift life. Our relationships are mended and we learn how to build new and healthy relationships with our friends, brothers and sisters, children, parents and we become good husbands. Cops can follow us and we don't have to worry about outstanding warrants. We become useful, productive and valuable members of society. And, we just don't use drugs anymore, at all.
Cancer? Yes I.ve got it. A nasty form I hear from the docs. And I believe in miracles - I see them all around. God is alive and active, loving and caring, and He has always had my back. God can't do what?
Bill
Friday, October 9, 2009
Something to say?
Maybe. At home a couple days ago, on the internet I found a drug trial going on for just my kind of cancer, Papillary Renal metastasized carcinoma. The drug being tested is the kind (a Met inhibitor) that might work in conjunction with my Tarceva. It is being done by GSK at several locations around the country, and the web site said they are recruiting new patients, even if they are already using another drug, like me. So I used my headhunter skills and dug around enough to get the doctor leading the study on the phone. I now have her direct line. But study is now closed - no more new patients. I think it must be hugely difficult to have to tell sick people that kind of news.
Clunk!! I was taken aback by how hopeful I got in just that hour or so following that trail. I felt angry, sad, scared, shed a few tears . . . and breathed. I was cordial and grateful to that doctor. She did tell me that with some current growth of my cancer, I would have a shot at a "compassionate usage" exception from the drug company. My cancer is not growing right now so for sure I am not eligible to even be considered. The doc said I need to give the Tarceva the full run as long as it works. Still, the "clunk" was up side of my head.
The minor but multiple side effects of Tarceva seem to be becoming more than minor. The hours of feeling good each day seem to be decreasing. The acne-like stuff on my face and chest is worse than before. Let's think of it as dead cancer cells oozing out. Instead of too tired by 9 or 10pm, it is sliding toward 8. My left nostril has dried blood each morning, and begins to bleed again if I blow too hard or dig out the clot. TMI?
Once again I have been sliding toward isolation, no meeting since last Friday for example. Couple days did not even leave the house. I tend to forget my plan for today because I did not write it down. I think to write it down but forget before getting to a pen.
This all adds up to a persistent wearing on me physically, emotionally. More positive is that Jacki and I are praying together each morning. Jacki has suggested taking a couple days break from the little white pill and that probably is a good idea. The thought triggers the fear that such a break would give the cancer a jump start. Ask my doc.
Writing all this is turning the tide in my internal battle to go for a bike ride. I had nearly talked myself out of it but I'm going now! Thanks for writing.
Bill
Clunk!! I was taken aback by how hopeful I got in just that hour or so following that trail. I felt angry, sad, scared, shed a few tears . . . and breathed. I was cordial and grateful to that doctor. She did tell me that with some current growth of my cancer, I would have a shot at a "compassionate usage" exception from the drug company. My cancer is not growing right now so for sure I am not eligible to even be considered. The doc said I need to give the Tarceva the full run as long as it works. Still, the "clunk" was up side of my head.
The minor but multiple side effects of Tarceva seem to be becoming more than minor. The hours of feeling good each day seem to be decreasing. The acne-like stuff on my face and chest is worse than before. Let's think of it as dead cancer cells oozing out. Instead of too tired by 9 or 10pm, it is sliding toward 8. My left nostril has dried blood each morning, and begins to bleed again if I blow too hard or dig out the clot. TMI?
Once again I have been sliding toward isolation, no meeting since last Friday for example. Couple days did not even leave the house. I tend to forget my plan for today because I did not write it down. I think to write it down but forget before getting to a pen.
This all adds up to a persistent wearing on me physically, emotionally. More positive is that Jacki and I are praying together each morning. Jacki has suggested taking a couple days break from the little white pill and that probably is a good idea. The thought triggers the fear that such a break would give the cancer a jump start. Ask my doc.
Writing all this is turning the tide in my internal battle to go for a bike ride. I had nearly talked myself out of it but I'm going now! Thanks for writing.
Bill
Wednesday, September 30, 2009
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
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
Wednesday, September 9, 2009
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
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
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
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
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
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
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
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
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
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
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
Friday, July 10, 2009
I said I would
I said I would write today, and it is a near done day so here I am. Of the to dos I set out for myself, I did not much of today, however, I need not talk bad to myself about it. My yardstick has never been very accurate anyway. So I can tell you that I house husbanded on the laundry, kitchen and making the bed. I made it to a meeting. I felt crappy much of the day, but I still was productive. Some days that just has to be enough.
Bill
Bill
Thursday, July 9, 2009
Allow Me to Introduce My Selves
All these blogs since February and now I almost feel like I am coming out of the closet. There are three characters who do not like me and all three live between my ears. Don't get all excited now, these characters aren't Sybil spinoffs. Rather, they are a way of looking at what goes on in my head, conscious and unconscious, thinking and providing play by play narrative. Please allow me to introduce my selves.
Cancer Man: You all know I have cancer. Cancer Man does not believe I will survive this disease. He believes he knows what from and when I will die. He looks constantly for symptoms or pains or anything to prove it is probably getting worse.
Depression Man: Depression Man says I don't feel like doing anything today, let's just watch TV and sleep and isolate with the ringer off.
Addict Man: Addict Man says "Listen to the other two, they are right and you're not worth the trouble anyway. He says I am not enough, never have been enough and never will be, so go ahead and make things worse, it doesn't matter anyway. Go get something to eat. Obsess on computer games. Sabotage any good thing going on in my life.
None of these characters really wants me to die because then their game would be up. And so, they compare notes. They connive, sneak, baffle and snicker. When desperate, they all pile on at the same time, kicking when I am down. They want me miserable, giving in to cancer, depression and addiction. I do have all 3 maladies, and so those three characters do live with me - they are part of me.
So, what can I do? I can talk back to them. I can say, "Shut the f**k up and sit back down, and I mean that in a loving way." They are part of me and I love me, so I like to think of them as newcomers at a 12 step meeting. They can be disruptive, but I do not have to let the chair the meeting. I love newcomers, they can be members, but they will not be allowed to take my recovery away from me! I do not have to succumb to addiction, depression nor cancer.
Any recover program, for whatever malady, requires action. Go to meetings, write, exercise, eat well, open up in my relationships with wife, daughter, friends and family. Take my physician prescribed medicine. Get some sunlight every day. Pray, meditate and ask for help.
The truth is, and maybe this is the real point of this posting, is that I have not been doing my action program to the best of my ability. It's kind of like someone quitting smoking and sneaking cigarettes. I have a plan, I do well at it for a few days, my intentions remain good, but the actual doing part goes downhill. then I close off from you because I don't want you to know that I am off plan. I stop telling the truth, asking for help, cut back on prayer isolate more and obsess on food, TV and/or video games. Completing the downward spiral, then I get to feel like a lousy participant in healing.
I will write again tomorrow and tell you what action I have taken since this post. And to the group in my head, "Let's let God chair the meeting!"
Bill
Cancer Man: You all know I have cancer. Cancer Man does not believe I will survive this disease. He believes he knows what from and when I will die. He looks constantly for symptoms or pains or anything to prove it is probably getting worse.
Depression Man: Depression Man says I don't feel like doing anything today, let's just watch TV and sleep and isolate with the ringer off.
Addict Man: Addict Man says "Listen to the other two, they are right and you're not worth the trouble anyway. He says I am not enough, never have been enough and never will be, so go ahead and make things worse, it doesn't matter anyway. Go get something to eat. Obsess on computer games. Sabotage any good thing going on in my life.
None of these characters really wants me to die because then their game would be up. And so, they compare notes. They connive, sneak, baffle and snicker. When desperate, they all pile on at the same time, kicking when I am down. They want me miserable, giving in to cancer, depression and addiction. I do have all 3 maladies, and so those three characters do live with me - they are part of me.
So, what can I do? I can talk back to them. I can say, "Shut the f**k up and sit back down, and I mean that in a loving way." They are part of me and I love me, so I like to think of them as newcomers at a 12 step meeting. They can be disruptive, but I do not have to let the chair the meeting. I love newcomers, they can be members, but they will not be allowed to take my recovery away from me! I do not have to succumb to addiction, depression nor cancer.
Any recover program, for whatever malady, requires action. Go to meetings, write, exercise, eat well, open up in my relationships with wife, daughter, friends and family. Take my physician prescribed medicine. Get some sunlight every day. Pray, meditate and ask for help.
The truth is, and maybe this is the real point of this posting, is that I have not been doing my action program to the best of my ability. It's kind of like someone quitting smoking and sneaking cigarettes. I have a plan, I do well at it for a few days, my intentions remain good, but the actual doing part goes downhill. then I close off from you because I don't want you to know that I am off plan. I stop telling the truth, asking for help, cut back on prayer isolate more and obsess on food, TV and/or video games. Completing the downward spiral, then I get to feel like a lousy participant in healing.
I will write again tomorrow and tell you what action I have taken since this post. And to the group in my head, "Let's let God chair the meeting!"
Bill
Wednesday, July 8, 2009
Up to speed
A couple people have asked for the whole story from start to present. So I will attempt a short synopsis of the journey so far.
Last Christmas time a routine annual physical chest x-ray revealed nodule looking things in my lungs. The subsequent catscan was a little lower than needed, so it accidentally picked up on a bulbous thing on my right kidney. The radiologist evaluation of what he saw suggested it could be kidney cancer tumor metastasized into my lungs. In that instant my life changed.
I discovered I could go to the Mayo Clinic right here in Scottsdale. I was poked & prodded, with several specialists looking into my body in ways I don't care to repeat. What was originally described as a long needle going into one of the lung nodules to biopsy a sample evolved into a full blown operation to cut two 1 1/2 inch triangles from my right lung. Fingers and instruments between my ribs through three holes. I hear I moaned for two days. My sponsees visited and got to point and say, " there's Bill on drugs." Real cards are they all. ;-) It still hurts when I sneeze or cough.
When all was said and done, Mayo diagnosed a urothelial carcinoma metastasized into my lungs. When pressed, the Oncologist said it is terminal and said maybe 2 years. In that instant my life changed . . . some more.
However, the guy suggested getting a second opinion. The 2nd guy said just cut out the kidney, but since his diagnosis was so different from Mayo, he encouraged a 3rd opinion and referred me to a kinda famous renal cancer specialist. He sent my biopsy tissue to a super duper pathology guy who IDed the culprit as a Metastasized Papillary Renal Carcinoma. Not curable, but might be able to slow it down with a drug newly tested on this unusual kind of cancer. That was the end of March - three months of being in the dark since Christmas. Jacki was struck just as bad as me. I'm telling you, it is tough on our loved ones.
Tarceva, the drug, is a little white pill that I take every day between 1pm to 2pm. No diarrhea, no throwing up, no hair falling out. My hair is breaking off in places (chest, arms, legs, hands and fingers)so I feel like a five day growth of whiskers. Decreases my cuddle ability. Spongy brain much of each day, tiredness 1 or 2 hours before and after the pill and 2 to 4 hours of poor balance follow the pill every day. Oh, let's not forget the acne like rash on my face. I guess it is poison, but it also "is my friend".
The one catscan since starting Tarceva shows no growth - the Doc says that is good. Wasn't what I wanted to hear nor what I was afraid to hear. Next scan is in a couple weeks.
That's my best effort at telling the facts. Maybe tomorrow I can get more into the way it feels. For now, I'm tired.
Bill
Last Christmas time a routine annual physical chest x-ray revealed nodule looking things in my lungs. The subsequent catscan was a little lower than needed, so it accidentally picked up on a bulbous thing on my right kidney. The radiologist evaluation of what he saw suggested it could be kidney cancer tumor metastasized into my lungs. In that instant my life changed.
I discovered I could go to the Mayo Clinic right here in Scottsdale. I was poked & prodded, with several specialists looking into my body in ways I don't care to repeat. What was originally described as a long needle going into one of the lung nodules to biopsy a sample evolved into a full blown operation to cut two 1 1/2 inch triangles from my right lung. Fingers and instruments between my ribs through three holes. I hear I moaned for two days. My sponsees visited and got to point and say, " there's Bill on drugs." Real cards are they all. ;-) It still hurts when I sneeze or cough.
When all was said and done, Mayo diagnosed a urothelial carcinoma metastasized into my lungs. When pressed, the Oncologist said it is terminal and said maybe 2 years. In that instant my life changed . . . some more.
However, the guy suggested getting a second opinion. The 2nd guy said just cut out the kidney, but since his diagnosis was so different from Mayo, he encouraged a 3rd opinion and referred me to a kinda famous renal cancer specialist. He sent my biopsy tissue to a super duper pathology guy who IDed the culprit as a Metastasized Papillary Renal Carcinoma. Not curable, but might be able to slow it down with a drug newly tested on this unusual kind of cancer. That was the end of March - three months of being in the dark since Christmas. Jacki was struck just as bad as me. I'm telling you, it is tough on our loved ones.
Tarceva, the drug, is a little white pill that I take every day between 1pm to 2pm. No diarrhea, no throwing up, no hair falling out. My hair is breaking off in places (chest, arms, legs, hands and fingers)so I feel like a five day growth of whiskers. Decreases my cuddle ability. Spongy brain much of each day, tiredness 1 or 2 hours before and after the pill and 2 to 4 hours of poor balance follow the pill every day. Oh, let's not forget the acne like rash on my face. I guess it is poison, but it also "is my friend".
The one catscan since starting Tarceva shows no growth - the Doc says that is good. Wasn't what I wanted to hear nor what I was afraid to hear. Next scan is in a couple weeks.
That's my best effort at telling the facts. Maybe tomorrow I can get more into the way it feels. For now, I'm tired.
Bill
Sunday, July 5, 2009
Write after the 4th
What a delight was the 4th. Good friends, good food, a place to get horizontal when I needed. Lots of smiles, story telling and laughter. The kind of day we hope to have regularly. A pink cloud day - full of gratitude. Jacki is such a delight to hang around with and enjoy, wherever we are. Thank you Jacki!
We had breakfast today with Kate and then a movie. Do you have any idea what a gift it is to see my wife and my daughter having fun being women together? They get along and talk so well with each other - I have had the opposite experience with a previous wife . . . or two.
The movie was the new Johnny Depp movie, Public Enemy. As usual, a stupendous job by Mr Depp. He plays John Dillinger the bank robber from 70 years ago. Definitely had us rooting for the bad guy while also wanting him caught. Turns out even the good guys had a very bad apple.
A good friend learned today that his mother died a couple days ago. Too many newspapers outside her door, so the neighbors called him. Very sad, and I know he will lean on those of us around him instead of getting stuffed and stoic. When God squeezes your heart, it comes out your eyes . . . and your nose. Real men can cry - it is a natural human letting go. Even big strong dams release water.
Bill
We had breakfast today with Kate and then a movie. Do you have any idea what a gift it is to see my wife and my daughter having fun being women together? They get along and talk so well with each other - I have had the opposite experience with a previous wife . . . or two.
The movie was the new Johnny Depp movie, Public Enemy. As usual, a stupendous job by Mr Depp. He plays John Dillinger the bank robber from 70 years ago. Definitely had us rooting for the bad guy while also wanting him caught. Turns out even the good guys had a very bad apple.
A good friend learned today that his mother died a couple days ago. Too many newspapers outside her door, so the neighbors called him. Very sad, and I know he will lean on those of us around him instead of getting stuffed and stoic. When God squeezes your heart, it comes out your eyes . . . and your nose. Real men can cry - it is a natural human letting go. Even big strong dams release water.
Bill
Friday, July 3, 2009
Write before the 4th
Replying to a friends email encouraging me to write after too long not doing so, I found myself writing about how it's going. So I will cheat and paste that in as a beginning: "I have been in a funk of sorts. Brain seems cloudy. I say that and some people call it chemo brain. No excuse, but it is how it feels to me. I am so tired of taking that stuff. It comes on like some drug of the past then makes me feel like crap – longer now than a month ago. Maybe a few hours instead of 1 or two. WEell, here I am writing, so maybe I will cut and paste it in to get me started, thank you."
There, a start.
The 4th of July is tomorrow. I remember accidentally finding the Liberty Bell while strolling in a park near downtown Philadelphia probably in 1978. I thought it was a replica and went closer, seeing it was the real thing. I turned 180 degrees and behold! There was Independence Hall where the Bell used to ring from its spire. Did you know PENSYLVANIA as spelled on the bell, is missing the 2nd n?
Anyway, I suddenly felt a shiver up my spine and tears in my eyes - a sensation I can only label as visceral Patriotism. A friend recently told me of her trip to Washington DC where she got the same overwhelming feeling of awe. The Capitol Mall must trigger that same visceral Patriotism. I would like to go there and walk the Mall.
That feeling of Patriotism is just that, something I feel more than just think. What have I ever done to protect that feeling which I would guess so many of us feel? I drew a very big lottery number in the draft for Viet Nam. I did not welcome the men coming back, never even occurred to me at the time. I did ask inane questions of my uncle when he returned. He has never really spoken with me since, and bridging that gap is beyond me and perhaps not even appropriate. I did call him a few years ago long distance and say, "Welcome back." But that was met with a distant reaction that I interpreted as no interest in "reupping" our relationship which once was close.
Today we all know to welcome and applaud the solders coming home. They are often older and people we know in our adult lives, not just the kids we sent to Viet Nam. They exemplify the action behind Patriotism, even when I disagree with why they are sent to wherever armpit location our leaders think best. I can welcome them when they come home and shudder when they are sent back again and again. Weekend warriors my ass!
What action can I take to back up my feeling of Patriotism? Is it the knee jerking verbal tirades and accusations of being "UNPATRIOTIC!"? I don't think so. Is it judging others' level of loyalty to our nation? Nooooo. How about speaking my mind in a strong yet cordial way when I see people in the USA treated without equality? Maybe. How about when I give to those who need something I can give, and give with out strings (maybe even anonymously)? Yes, I like that one.
Recently I encountered a person near my circle of acquaintance. He basically screamed at me about some very conservative (much further right than any of my family)beliefs at odds with my left/moderate lean to the left. He expressed hatred and ill will, even a desire for all the recent efforts to repair our nations ills to fail. Not just fail, but fail miserably, squashing even further our poor, our hungry, our sick, and our suffering, children and elderly included. I am not sure what he wanted, but I hope he is not an example of our system of bipartisan checks and balances. I hope he is not an example of what he claimed is being a Patriot. Hate and vitriol, hoping for failure. I did not see those qualities etched in the Liberty Bell alongside the misspelled Pincilvanea.
Cheers to all of us who appreciate the diversity in our country and all that diversity can continue to accomplish. I am hopeful.
Bill
There, a start.
The 4th of July is tomorrow. I remember accidentally finding the Liberty Bell while strolling in a park near downtown Philadelphia probably in 1978. I thought it was a replica and went closer, seeing it was the real thing. I turned 180 degrees and behold! There was Independence Hall where the Bell used to ring from its spire. Did you know PENSYLVANIA as spelled on the bell, is missing the 2nd n?
Anyway, I suddenly felt a shiver up my spine and tears in my eyes - a sensation I can only label as visceral Patriotism. A friend recently told me of her trip to Washington DC where she got the same overwhelming feeling of awe. The Capitol Mall must trigger that same visceral Patriotism. I would like to go there and walk the Mall.
That feeling of Patriotism is just that, something I feel more than just think. What have I ever done to protect that feeling which I would guess so many of us feel? I drew a very big lottery number in the draft for Viet Nam. I did not welcome the men coming back, never even occurred to me at the time. I did ask inane questions of my uncle when he returned. He has never really spoken with me since, and bridging that gap is beyond me and perhaps not even appropriate. I did call him a few years ago long distance and say, "Welcome back." But that was met with a distant reaction that I interpreted as no interest in "reupping" our relationship which once was close.
Today we all know to welcome and applaud the solders coming home. They are often older and people we know in our adult lives, not just the kids we sent to Viet Nam. They exemplify the action behind Patriotism, even when I disagree with why they are sent to wherever armpit location our leaders think best. I can welcome them when they come home and shudder when they are sent back again and again. Weekend warriors my ass!
What action can I take to back up my feeling of Patriotism? Is it the knee jerking verbal tirades and accusations of being "UNPATRIOTIC!"? I don't think so. Is it judging others' level of loyalty to our nation? Nooooo. How about speaking my mind in a strong yet cordial way when I see people in the USA treated without equality? Maybe. How about when I give to those who need something I can give, and give with out strings (maybe even anonymously)? Yes, I like that one.
Recently I encountered a person near my circle of acquaintance. He basically screamed at me about some very conservative (much further right than any of my family)beliefs at odds with my left/moderate lean to the left. He expressed hatred and ill will, even a desire for all the recent efforts to repair our nations ills to fail. Not just fail, but fail miserably, squashing even further our poor, our hungry, our sick, and our suffering, children and elderly included. I am not sure what he wanted, but I hope he is not an example of our system of bipartisan checks and balances. I hope he is not an example of what he claimed is being a Patriot. Hate and vitriol, hoping for failure. I did not see those qualities etched in the Liberty Bell alongside the misspelled Pincilvanea.
Cheers to all of us who appreciate the diversity in our country and all that diversity can continue to accomplish. I am hopeful.
Bill
Thursday, June 18, 2009
"My friend" is Unpredictable
The little white pill is unpredictable. I thought I had a routine: take pill @ 1 or 2 pm, feel "hinky" for a couple hours and then have a pleasant late afternoon and evening. The program seems to be changing. Saturday, to try and entertain after 1pm, I took "my friend" at 11am; 2 or 3 hours earlier than my routine. I swear, I was messed up for two days. I mean like hunkered down in a cave. Tuesday and Wed I rode my bike knowing that would help, but both days were still odd. Today I rode, took the pill at 1:15pm, pushed through to ride home, showered and putzed on the computer and then about 5 the hinky feeling started. Poor balance, shaky legs and hands, jello feeling in my head. What do you call that? Hinky.
I don't like it. But, there is no dirt on my belly, I am vertical most of the time, and I am sucking air. We all know the little white pill is working and the discomfort is worth it.
Meanwhile, I spoke with one of the more impactful people in my recovery, a woman I admire. She was waylaid by a surprise heart problem and I ask that you steer your prayers her way. It's not just me, she has helped many many addicts to recover and we need her!
Bill
I don't like it. But, there is no dirt on my belly, I am vertical most of the time, and I am sucking air. We all know the little white pill is working and the discomfort is worth it.
Meanwhile, I spoke with one of the more impactful people in my recovery, a woman I admire. She was waylaid by a surprise heart problem and I ask that you steer your prayers her way. It's not just me, she has helped many many addicts to recover and we need her!
Bill
Saturday, June 13, 2009
Push through?
Today I'm gonna find out if I can push through my late morning dip in alertness/energy without getting horizontal for a little while, and through the post little white pill 2 - 4 hour "hinky" period. I have people coming over for BBQ and later a speaker meeting in West Valley. The prep stuff this morning has me running low and so I'm taking a break. When Jacki and I have people over I tend to run around doing whatever it takes to make it exceptionally good for all. Maybe it's possible to let our guests help, like another person can probably do the actual cooking just fine.
A BBQ just does not seem like the big deal my head thinks it is. I am wound up at this moment over something that really is just a gathering of friends. People who just want time, not a magnificent array of gastronomical delights. I snapped at Jacki this morning. I know it was due to me being wound up. I fretted over this last evening, fearing that the little white pill would prevent me from doing it right. Will I be tired and not be a good speaker this evening because I tried to do too much? I am more limited than I used to be but I really don't know how much. But really now, what does it matter. God's in charge and it's all okay.
I learned early in recovery that I have an MMM - Magnificent Magnifying Mind. It is good at blowing things out of proportion; making molehills into mountains; causing me to sweat the small stuff; giving me the delusion that I have to handle something huge. By myself.
Take cancer for example. Sometimes my mind can make just as big a deal out of a BBQ as it does cancer. Truth is, even my cancer pales in relation to all the rest of my previous life and in relation to all the living I still get to do. But fear pops up. Something as tiny as not doing a BBQ correctly can trigger my fear button - fear that I will look less than and others will see I am not perfect. That fear then sets me up to act on shortcomings like getting snappy with Jacki.
The cancer triggers fear that I will lose this sweet life I enjoy. The fear alone takes away from that life. The fear assumes that all the good stuff is over. And then I think I have to stand up to it, again by myself, and be the perfect seeking to survive cancer patient. People will think less of me if I do not survive.
My head can get on such merry go rounds and wind them up tight enough to go beyond my usual amusing speed of spin. To do so I have to step into fear, assume I am alone, know that I am not enough to push on through and not connect with my God and all of you standing beside me holding each other up. And of course I have to magnify and sweat the small sh*t. Instead, just for today maybe I will just enjoy the afternoon and evening, trusting God will get it done even without much help from me. Whew, what a load off my back. Jacki will be home shortly and I get to set it right with her for the bit of harm from my snap.
Bill
A BBQ just does not seem like the big deal my head thinks it is. I am wound up at this moment over something that really is just a gathering of friends. People who just want time, not a magnificent array of gastronomical delights. I snapped at Jacki this morning. I know it was due to me being wound up. I fretted over this last evening, fearing that the little white pill would prevent me from doing it right. Will I be tired and not be a good speaker this evening because I tried to do too much? I am more limited than I used to be but I really don't know how much. But really now, what does it matter. God's in charge and it's all okay.
I learned early in recovery that I have an MMM - Magnificent Magnifying Mind. It is good at blowing things out of proportion; making molehills into mountains; causing me to sweat the small stuff; giving me the delusion that I have to handle something huge. By myself.
Take cancer for example. Sometimes my mind can make just as big a deal out of a BBQ as it does cancer. Truth is, even my cancer pales in relation to all the rest of my previous life and in relation to all the living I still get to do. But fear pops up. Something as tiny as not doing a BBQ correctly can trigger my fear button - fear that I will look less than and others will see I am not perfect. That fear then sets me up to act on shortcomings like getting snappy with Jacki.
The cancer triggers fear that I will lose this sweet life I enjoy. The fear alone takes away from that life. The fear assumes that all the good stuff is over. And then I think I have to stand up to it, again by myself, and be the perfect seeking to survive cancer patient. People will think less of me if I do not survive.
My head can get on such merry go rounds and wind them up tight enough to go beyond my usual amusing speed of spin. To do so I have to step into fear, assume I am alone, know that I am not enough to push on through and not connect with my God and all of you standing beside me holding each other up. And of course I have to magnify and sweat the small sh*t. Instead, just for today maybe I will just enjoy the afternoon and evening, trusting God will get it done even without much help from me. Whew, what a load off my back. Jacki will be home shortly and I get to set it right with her for the bit of harm from my snap.
Bill
Wednesday, June 10, 2009
Survivors
I have recently begun getting to know a cancer survivor who is inspiring. Notice I did not say I am inspired. Rather I would like to be inspired by what he has done and how he does it. He had two or three cancer bouts that included serious chemo and radiation. For awhile he had to wear a Sh*t bag (I don't know it's proper name). He rode his bicycle wearing that thing. Now he exercises hours a day, fasts over a day each week, and practices regular formal meditation. That's his story and I find myself disbelieving. How can anyone be that disciplined? How could I be that disciplined?
His cancer was terminal - instead of dying, he did things like have lunch during 3 or 4 hours of IV chemo. He says exercise, diet and meditation is the key. I want to be inspired.
First definition in Webster's for inspire is: transitive verb; to influence, move, or guide by divine or supernatural inspiration. Too big a part of me just does not buy into me being so inspired as to behave in such a positively obsessive way as my new friend does. And yet, for 15 years I have been practicing a spiritual path and I have seen many miracles. Divine inspiration is waiting for me to reach for and participate in my own miracle. My friend's
actions have maximized his body's natural immune system and its ability to heal. What about me?
It is not news to me that self sabotage is my biggest shortcoming. Hmmmmmmmmmmm. Shortcomings; the things in me my sponsor has asked me to write about. Maybe that is what I am doing here. TOMORROW I WILL RIDE MY BICYCLE. God, please help me . . . some more.
Bill
His cancer was terminal - instead of dying, he did things like have lunch during 3 or 4 hours of IV chemo. He says exercise, diet and meditation is the key. I want to be inspired.
First definition in Webster's for inspire is: transitive verb; to influence, move, or guide by divine or supernatural inspiration. Too big a part of me just does not buy into me being so inspired as to behave in such a positively obsessive way as my new friend does. And yet, for 15 years I have been practicing a spiritual path and I have seen many miracles. Divine inspiration is waiting for me to reach for and participate in my own miracle. My friend's
actions have maximized his body's natural immune system and its ability to heal. What about me?
It is not news to me that self sabotage is my biggest shortcoming. Hmmmmmmmmmmm. Shortcomings; the things in me my sponsor has asked me to write about. Maybe that is what I am doing here. TOMORROW I WILL RIDE MY BICYCLE. God, please help me . . . some more.
Bill
Sunday, June 7, 2009
My Thick Head
Getting it through my thick head that this is a looooooooonngg process has changed the picture as I see it. Maybe cancer does not have to reign supreme at renting space in my head. Maybe I can live without wondering if every little pain or ache or cough or whatever is the cancer on a rampage. Maybe it can sit in the back seat and not get to drive so often. A certain sense of freedom is unfolding. What could I be free to do? Ideas?
Thank you for participating.
Bill
Thank you for participating.
Bill
Thursday, June 4, 2009
The Long Haul
We met with the Doc today to go over results from last week's catscan. Nothing is bigger and nothing is smaller. No shrinkage and no growth. The doc says this is good news. For me, it is not the news I hoped for, but also not the news I feared.
Doc scheduled me to come back in six weeks, not the every other week as before. He wants another catscan in 12 weeks, not the eight weeks as prior. Apparently any changes in my cancer will be very slow, be they growth or shrinkage. Please, remember that with this type of cancer, metastasized papillary renal carcinoma, stopping the growth is very good news. This type grows slowly but is hard to treat. I am in for a long haul. Jacki is in for a long haul. All of you in my corner are in for a long haul.
So how do I live my life? What do I do with my days and months and years? I have a few role models, people who can no longer work but have rich and useful lives. We do recovery, and a bit more service. And, maybe we volunteer in other ways. Several of you have suggested I write a book - I go immediately to the best seller or not worth writing. Maybe not a good reason to totally reject the possibility. However, there are two causes peripheral to addiction, that touch my heart.
Many years ago I volunteered at a crisis nursery 4 hours per week. I did that for four months. I remember assembly line diaper changing. Playing lullabies on my harmonica hoping a room of 15 babies will sleep for awhile at night. And I remember the horrors of abuse that some of the infants came with to the nursery. Cigarette burns on tiny feet sticks in my head. I know that I felt useful and I had a pretty good touch with the babies.
Secondly, I feel drawn to somehow volunteer in a domestic violence prevention role. It is an issue personal to me in my own life. I grew up with a family tree rife with hitting and throwing and yelling at women and at children. My dad was not as bad as his dad, who was not as bad as his dad, on back to some beginning generation of family violence that no one can pinpoint. Three different times I slapped my first wife. 1978. I remember it like yesterday. I felt so small and ashamed. I vowed never to hit again, and I never have. However, what happened to that anger? What is a man to do with emotions he learned are not okay to feel? Hitting, throwing and yelling is what I learned to do with those feelings, and now, with that vow, hitting is no longer an option. What to do now?
I was not aware in 1978 of that dilemma. Looking back I can see a lot of stuffed emotions and more and more drug use to help keep them stuffed. Don't interpret that to mean I became an addict because of how I was treated as a boy. Rather, I was trapped with that dilemma - what to do instead of rage? None of the men in my family showed any answer to that question, and I remember not one single time of anyone anywhere in those days even have a discussion about such a subject. It has taken years of a tough and costly road, before and since getting clean, to begin to solve that dilemma in an effective and healthy way. I see many of my fellows in recovery, who suffer from that same kind of bottled up with no outlet emotions. I think I have helped some of them and maybe I can do more outside the rooms of recovery. I am interested.
Thank God for very slow growing bad stuff that also has some silver lining. Knowing a possible way that I will one day die, does not make me at all special. It is likely cancer will not cause my demise anyway. What really makes me special is that I am like you. Thanks.
Bill
Doc scheduled me to come back in six weeks, not the every other week as before. He wants another catscan in 12 weeks, not the eight weeks as prior. Apparently any changes in my cancer will be very slow, be they growth or shrinkage. Please, remember that with this type of cancer, metastasized papillary renal carcinoma, stopping the growth is very good news. This type grows slowly but is hard to treat. I am in for a long haul. Jacki is in for a long haul. All of you in my corner are in for a long haul.
So how do I live my life? What do I do with my days and months and years? I have a few role models, people who can no longer work but have rich and useful lives. We do recovery, and a bit more service. And, maybe we volunteer in other ways. Several of you have suggested I write a book - I go immediately to the best seller or not worth writing. Maybe not a good reason to totally reject the possibility. However, there are two causes peripheral to addiction, that touch my heart.
Many years ago I volunteered at a crisis nursery 4 hours per week. I did that for four months. I remember assembly line diaper changing. Playing lullabies on my harmonica hoping a room of 15 babies will sleep for awhile at night. And I remember the horrors of abuse that some of the infants came with to the nursery. Cigarette burns on tiny feet sticks in my head. I know that I felt useful and I had a pretty good touch with the babies.
Secondly, I feel drawn to somehow volunteer in a domestic violence prevention role. It is an issue personal to me in my own life. I grew up with a family tree rife with hitting and throwing and yelling at women and at children. My dad was not as bad as his dad, who was not as bad as his dad, on back to some beginning generation of family violence that no one can pinpoint. Three different times I slapped my first wife. 1978. I remember it like yesterday. I felt so small and ashamed. I vowed never to hit again, and I never have. However, what happened to that anger? What is a man to do with emotions he learned are not okay to feel? Hitting, throwing and yelling is what I learned to do with those feelings, and now, with that vow, hitting is no longer an option. What to do now?
I was not aware in 1978 of that dilemma. Looking back I can see a lot of stuffed emotions and more and more drug use to help keep them stuffed. Don't interpret that to mean I became an addict because of how I was treated as a boy. Rather, I was trapped with that dilemma - what to do instead of rage? None of the men in my family showed any answer to that question, and I remember not one single time of anyone anywhere in those days even have a discussion about such a subject. It has taken years of a tough and costly road, before and since getting clean, to begin to solve that dilemma in an effective and healthy way. I see many of my fellows in recovery, who suffer from that same kind of bottled up with no outlet emotions. I think I have helped some of them and maybe I can do more outside the rooms of recovery. I am interested.
Thank God for very slow growing bad stuff that also has some silver lining. Knowing a possible way that I will one day die, does not make me at all special. It is likely cancer will not cause my demise anyway. What really makes me special is that I am like you. Thanks.
Bill
Sunday, May 31, 2009
Look in the mirror
Looking at pictures of myself, from the convention, from recent family gatherings, I see a guy with a pale face and a red nose. I think I look worse than I feel, and my vanity kicks in. Pictures of me have looked odd to me for a couple of years. My face is rounder, my teeth are more crooked, my belly is bigger. My self image, my physical self, is low right now, as I write. Intellectually I know it is from the pill, from cancer, from getting older, from the hard life I have lived. "If I had known I would live this long I would have taken better care of me."
And then there is the mirror. Not the one I examine myself and practice making faces in, but the mirror that you are. You who see me and hear me and tell me what you see. "You look good!" is a frequent comment. But more revealing is like Linda's comment from my last post. "I love you", "I like being with you", the smiles reflected back at me, your phone calls, texts and emails. Maybe most of all, the hugs, tell me a different story than when I see pictures of the pale face with the red nose. I know I am not alone seeing the worst in me but having the best reflected back at me. You are that mirror. Thank you!
I had the catscan last Tuesday, but I won't go over the results with the doc until Thursday the 4th. Sure seems a long wait. The doc is out Monday and Thu is the next day Jacki can schedule to go with me. Too many what ifs and yes buts and how abouts run in my head when I let the faucet of my thoughts start running down that trough.
Jacki has a friend whose husband has the same exact kind of cancer - papillary renal carcinoma. Mine is metastasized (into my lungs) but his is not. I use the present tense about him, but the thing is, he died a couple days ago. After 5 1/2 years of life post diagnosis. That is longer than any of the doctors have suggested to me, and so it is in a way good news for my case. But it sure brings it home to me about where I stand. Easy it is to turn to a slippery slope of despair and forget about cures and miracles and maybe responding well to the poisonous little white pill I take every day.
Friday and today I got to play chef for to different segments of my family. Best steaks I ever grilled were the ribeyes on Friday, and the burgers today were pretty good. My sister Gina is still here, until Tuesday. Movie and hanging all afternoon with Kate and Jacki and Gina Sat afternoon. Today the contagious laughter of little kids and shared stories and smiles with the adults. A couple sponsees did step work with me, and a few guys were over last Thu. Calls from some of them every day. This is my life. It is rich in relationships with people I get to say to and hear from, "I love you!" Mine is to feel incredibly profound gratitude for the fullness of life I am privileged to experience right here and right now. Thank you.
Bill
And then there is the mirror. Not the one I examine myself and practice making faces in, but the mirror that you are. You who see me and hear me and tell me what you see. "You look good!" is a frequent comment. But more revealing is like Linda's comment from my last post. "I love you", "I like being with you", the smiles reflected back at me, your phone calls, texts and emails. Maybe most of all, the hugs, tell me a different story than when I see pictures of the pale face with the red nose. I know I am not alone seeing the worst in me but having the best reflected back at me. You are that mirror. Thank you!
I had the catscan last Tuesday, but I won't go over the results with the doc until Thursday the 4th. Sure seems a long wait. The doc is out Monday and Thu is the next day Jacki can schedule to go with me. Too many what ifs and yes buts and how abouts run in my head when I let the faucet of my thoughts start running down that trough.
Jacki has a friend whose husband has the same exact kind of cancer - papillary renal carcinoma. Mine is metastasized (into my lungs) but his is not. I use the present tense about him, but the thing is, he died a couple days ago. After 5 1/2 years of life post diagnosis. That is longer than any of the doctors have suggested to me, and so it is in a way good news for my case. But it sure brings it home to me about where I stand. Easy it is to turn to a slippery slope of despair and forget about cures and miracles and maybe responding well to the poisonous little white pill I take every day.
Friday and today I got to play chef for to different segments of my family. Best steaks I ever grilled were the ribeyes on Friday, and the burgers today were pretty good. My sister Gina is still here, until Tuesday. Movie and hanging all afternoon with Kate and Jacki and Gina Sat afternoon. Today the contagious laughter of little kids and shared stories and smiles with the adults. A couple sponsees did step work with me, and a few guys were over last Thu. Calls from some of them every day. This is my life. It is rich in relationships with people I get to say to and hear from, "I love you!" Mine is to feel incredibly profound gratitude for the fullness of life I am privileged to experience right here and right now. Thank you.
Bill
Thursday, May 28, 2009
Okay, I'll write!
It is difficult for me to describe the small subjective effects of the little white daily chemo pill. Most days I take it between 1 and 2 pm. 15 to 30 minutes later it hits. My head gains a jello sensation - no, harder like a memory foam mattress. I get a little wobbly and do not feel safe driving. Most days about an hour into it, I have to get horizontal and some days actually fall asleep for 30 to 45 minutes. Rarely longer, and more frequently I just linger in a semi sleep mode.
Numb or flat are the best words I have found to describe an encompassing mental and physical sensation. I will have moments, maybe minutes of spark but not fire, just a wisp of smoke. I forget what I am doing many times a day. Recently the effects are stretching into more of each day and I feel them in the mornings a little, even before today's dose. If this stuff works, I will be happy with several times the impact on my head and my body. My immune system is down: slow healing, a persistent cough from a cold I had 2 weeks ago. I have an ingrown toenail for the first time in my life. The hairs on my fingers, hands, and parts of my arms and legs feel like I got too close to a fire.
Good grief, this goes on and on, such is my life today. Except for the good parts. They still make up most of my moments. My daughter graduating was big. My sister is in town for eight days. She went on a twelve step call with a sponsee and me yesterday. Maybe the guy will stay off heroin, but Gina and I shared the spirit of giving together in a way that gave her a sense of what my life in recovery is about. We feel closer. I have not shared this kind of time with her . . . ever! And it's a treasure.
But the small things give small bursts of steady joy that make daily life an engrossing experience. I have ridden the new light rail from Tempe into central Phoenix a couple times. Feels like a real city living within earth friendly parameters. The people riding mostly seem friendly and happy; ready to engage in banter and discussion. Lots of smiles.
Ever eat a seedless grape, the red skin snapping into the soft sweet heart of a small little delight? Whoever designed this man altered morsel also designed the man/woman who figured out how to make it seedless. That designer also is on my side whuppin' the cancer. I feel pretty good about that!
Bill
Numb or flat are the best words I have found to describe an encompassing mental and physical sensation. I will have moments, maybe minutes of spark but not fire, just a wisp of smoke. I forget what I am doing many times a day. Recently the effects are stretching into more of each day and I feel them in the mornings a little, even before today's dose. If this stuff works, I will be happy with several times the impact on my head and my body. My immune system is down: slow healing, a persistent cough from a cold I had 2 weeks ago. I have an ingrown toenail for the first time in my life. The hairs on my fingers, hands, and parts of my arms and legs feel like I got too close to a fire.
Good grief, this goes on and on, such is my life today. Except for the good parts. They still make up most of my moments. My daughter graduating was big. My sister is in town for eight days. She went on a twelve step call with a sponsee and me yesterday. Maybe the guy will stay off heroin, but Gina and I shared the spirit of giving together in a way that gave her a sense of what my life in recovery is about. We feel closer. I have not shared this kind of time with her . . . ever! And it's a treasure.
But the small things give small bursts of steady joy that make daily life an engrossing experience. I have ridden the new light rail from Tempe into central Phoenix a couple times. Feels like a real city living within earth friendly parameters. The people riding mostly seem friendly and happy; ready to engage in banter and discussion. Lots of smiles.
Ever eat a seedless grape, the red skin snapping into the soft sweet heart of a small little delight? Whoever designed this man altered morsel also designed the man/woman who figured out how to make it seedless. That designer also is on my side whuppin' the cancer. I feel pretty good about that!
Bill
Sunday, May 17, 2009
Feeling Good
Physically I do not feel well today. I have a cold for the first time since I stopped smoking over 3 years ago. The cold is moving into my chest with the resulting cough and hack. My stomach muscles are sore. Is my immune system down because of the little white chemo pill? Probably. Too bad this cell killing medicine isn't selective enough to just wipe out cancer cells and leave white blood cells alone.
2 more weeks and I get another catscan to look at how much the lung nodules have shrunk. Getting the cold I think indicates it is working. For now, I'll take it.
Bill
2 more weeks and I get another catscan to look at how much the lung nodules have shrunk. Getting the cold I think indicates it is working. For now, I'll take it.
Bill
Wednesday, May 13, 2009
Not much
Not much to say today. Mostly today I have hibernated. Probably over did it yesterday - not much stamina these days. Each day I feel some level of dread about taking my friend, the Little White Pill. It seems to have now settled in to a predictable effect on my body and mind. For two to four hours after taking it I get to feel hinky or squiggly or twitchy - I have not found quite the accurate word. Then throw in tired and sluggish thinking. Still have some minor acne-like rash on my face. That's about the sum of my side effects.
The thing is, I would gladly suffer more if that's what it takes to whup this cancer. I am grateful what side effects I get from this chemo are relatively minor, but it's just gotta work. If more discomfort increased the odds I would gladly go there. Some of this stage in the process is very similar to the waiting a couple months ago for the diagnosis to be pinned down. I want to know how well my friend, this Little White Pill, is working. Tick tock. Probably reason number 47 why hibernating is not good for me right now.
Date night this evening with Jacki, and Kate is joining us for dinner. I have talked with a few guys in recovery today by phone. So there is my relationships leg of dealing. I will walk at least to the mail box - there is at least a little of the physical activity leg. I guess I did do some recovery stuff today - read JFT, sponsorship, pray, so there's a bit of the recovery leg. Okay, I won't talk bad to myself saying I was lazy today - I did more than I thought. cya tomorrow.
Bill
The thing is, I would gladly suffer more if that's what it takes to whup this cancer. I am grateful what side effects I get from this chemo are relatively minor, but it's just gotta work. If more discomfort increased the odds I would gladly go there. Some of this stage in the process is very similar to the waiting a couple months ago for the diagnosis to be pinned down. I want to know how well my friend, this Little White Pill, is working. Tick tock. Probably reason number 47 why hibernating is not good for me right now.
Date night this evening with Jacki, and Kate is joining us for dinner. I have talked with a few guys in recovery today by phone. So there is my relationships leg of dealing. I will walk at least to the mail box - there is at least a little of the physical activity leg. I guess I did do some recovery stuff today - read JFT, sponsorship, pray, so there's a bit of the recovery leg. Okay, I won't talk bad to myself saying I was lazy today - I did more than I thought. cya tomorrow.
Bill
Sunday, May 10, 2009
MBA Girl & Moms
Wow! What a weekend! Yesterday I was privileged to watch my only child, a young adult I admire, graduate with her MBA degree. All the pomp and circumstance, cap and gown, the whole 9 yards. Good thing I had strong buttons on my shirt 'cause they wanted to pop off. And then, she just had to have sushi to celebrate and she has found a nice little mom & pop place with excellent elegantly displayed sushi, sashimi, and even some cooked stuff for less refined taste buds. ;-) What a good time we had! Thanks Kate!
Today of course is Mother's Day. Some of the mothers I know, because of wreckage of the past from active addiction, are not in their children's lives. How sad those stories are, yet I have seen such depth of emotion, bonds and longings that run deep to the core of all those women now that they are clean and recovering. I have been privileged to watch some of those torn apart bonds reconnect and heal through the recovery process. Some of the women I know however, no matter the quality and depth of their recovery, no matter their desire to set things right, never experience the opportunity to again know their children.
I say all that because I am so grateful for being so close with my daughter, and knowing my Mother, feeling her love, all my life. And I appreciate all those women unable to reconnect with their children who give in so many other ways. Their children would be proud of them.
Cancer? Even that fades into the shadow of the importance and power of mothers and daughters and sisters and wives. Often I miss the boat of understanding them, but they are awesome, so I keep paddling, hard, to catch up.
Bill
Today of course is Mother's Day. Some of the mothers I know, because of wreckage of the past from active addiction, are not in their children's lives. How sad those stories are, yet I have seen such depth of emotion, bonds and longings that run deep to the core of all those women now that they are clean and recovering. I have been privileged to watch some of those torn apart bonds reconnect and heal through the recovery process. Some of the women I know however, no matter the quality and depth of their recovery, no matter their desire to set things right, never experience the opportunity to again know their children.
I say all that because I am so grateful for being so close with my daughter, and knowing my Mother, feeling her love, all my life. And I appreciate all those women unable to reconnect with their children who give in so many other ways. Their children would be proud of them.
Cancer? Even that fades into the shadow of the importance and power of mothers and daughters and sisters and wives. Often I miss the boat of understanding them, but they are awesome, so I keep paddling, hard, to catch up.
Bill
Friday, May 8, 2009
What to Say?
Most of this blog has been oriented to get what's inside me out into the light. Whatever gets stuffed down and in still comes out - sideways, often in the form of bizarre behavior. Sideways used to work for me, but at the expense of others and to my relationships. Stuffing it is not useful to my health and in this case fighting cancer. Rather, stuffing feelings down and in feeds cancer and every self destructive thing in my life. God help me get it out.
It's probably a culmination of fear, sad, grief, depression, shock, but this little white chemo pill has put the biggest lock on feeling much of anything. My body is tense from head to toe. I need a sleep aid. I feel numb, dull, shadowed, and closed.
This poisonous medicine has built up in my system to where it must be to be effective at shrinking my tumors. The effect on my brain however is very frustrating. Each day has from 2 to 5 hours of near debilitating cloudy thinking, increased forgetfulness, and decreased coordination. My balance is shaky and sometimes I should not drive. The side effects were predicted to be acne-like rash (minimal now), diarrhea (none yet) and fatigue (some of every day). Maybe the increasing levels of brain centered difficulty is a just for me side effect. How special is that?
The longer I have been clean, the more light weight I have become with many OTC and/or prescribed drugs. 1/8th of a sleep aid. One Dayquil capsule instead of two. Finding an effective medicine to treat my depression was a very long process of trial and error through about eight different drugs. Each tiny increase or decrease had a definitive noticeable impact on me. I suppose therefore that the little white pill (chemo is my friend) should be no different. Its effects on me include some not even noticed by other patients or acknowledged by doctors. Certainly not mentioned to me before starting. Even in cancer I have become very sensitive to drugs.
None of my subjective and nebulous symptoms are that big a deal. As far as chemo goes, my oral stuff is a breeze compared to IV treatments that overwhelm patients. I am grateful for that. The ego trashing I gave myself over not working is finally swept away - there is no way at all I could do any job with any structure or regularity. Even social security was easy for me to qualify. No check until August, but at least I know something will be coming in.
Jacki told me to write. It has helped a little. Wrote this one with no tears; a first. I'm not sure that's a good thing, but it's where I am today. Thanks for hanging in there with me. Now, there's a tear.
Bill
It's probably a culmination of fear, sad, grief, depression, shock, but this little white chemo pill has put the biggest lock on feeling much of anything. My body is tense from head to toe. I need a sleep aid. I feel numb, dull, shadowed, and closed.
This poisonous medicine has built up in my system to where it must be to be effective at shrinking my tumors. The effect on my brain however is very frustrating. Each day has from 2 to 5 hours of near debilitating cloudy thinking, increased forgetfulness, and decreased coordination. My balance is shaky and sometimes I should not drive. The side effects were predicted to be acne-like rash (minimal now), diarrhea (none yet) and fatigue (some of every day). Maybe the increasing levels of brain centered difficulty is a just for me side effect. How special is that?
The longer I have been clean, the more light weight I have become with many OTC and/or prescribed drugs. 1/8th of a sleep aid. One Dayquil capsule instead of two. Finding an effective medicine to treat my depression was a very long process of trial and error through about eight different drugs. Each tiny increase or decrease had a definitive noticeable impact on me. I suppose therefore that the little white pill (chemo is my friend) should be no different. Its effects on me include some not even noticed by other patients or acknowledged by doctors. Certainly not mentioned to me before starting. Even in cancer I have become very sensitive to drugs.
None of my subjective and nebulous symptoms are that big a deal. As far as chemo goes, my oral stuff is a breeze compared to IV treatments that overwhelm patients. I am grateful for that. The ego trashing I gave myself over not working is finally swept away - there is no way at all I could do any job with any structure or regularity. Even social security was easy for me to qualify. No check until August, but at least I know something will be coming in.
Jacki told me to write. It has helped a little. Wrote this one with no tears; a first. I'm not sure that's a good thing, but it's where I am today. Thanks for hanging in there with me. Now, there's a tear.
Bill
Saturday, May 2, 2009
Cloudy
It has been very difficult to write recently. My brain seems cloudy. I am out of touch with what is going on inside me - how I feel. My body is tense, jaw is clenched, neck is knotted, legs remain "at the ready" and my brow furrows. Meditation is virtually non existent and prayer feels disconnected. Depression hangs on me more than anytime since this process started in early January. What is up?
Monday is one month of taking the little white pill (chemo is my friend). The pill basically is poison hopefully directed mostly at the nodules in my lungs and the baseball on my kidney. I know it also effects my skin (the rash/acne), my brain and my energy. Slogging through mud describes part of each day.
I write that stuff and my head goes immediately to self pity and moping and self centeredness. "they" will think I am whining. The truth is that I go there each day, multiple times, but not all the time. I also spend some time in gratitude, empathy and compassion for others. The two ends of my emotional spectrum revolve moment to moment.
Topic at the meeting last night was self honesty. Someone shared about being afraid of looking bad and I can sure relate. But then I had another thought. If I risk looking bad with many of you then I do not look bad, I look like you. We are similar. This cancer crap would be tough for any of you as well as me. I am not alone and I am not different. It is my business how I feel and it is my responsibility to try and get it out in the open - talk and write and pray. I can lean into it by leaning toward positive, gratitude and spiritual connection. I can tell the truth. Except when this dam* drug has me so balled up that I cannot recognize what I fell or even think. That's where you guys come in - the mirrors to help me see. I love you too!
Bill
Monday is one month of taking the little white pill (chemo is my friend). The pill basically is poison hopefully directed mostly at the nodules in my lungs and the baseball on my kidney. I know it also effects my skin (the rash/acne), my brain and my energy. Slogging through mud describes part of each day.
I write that stuff and my head goes immediately to self pity and moping and self centeredness. "they" will think I am whining. The truth is that I go there each day, multiple times, but not all the time. I also spend some time in gratitude, empathy and compassion for others. The two ends of my emotional spectrum revolve moment to moment.
Topic at the meeting last night was self honesty. Someone shared about being afraid of looking bad and I can sure relate. But then I had another thought. If I risk looking bad with many of you then I do not look bad, I look like you. We are similar. This cancer crap would be tough for any of you as well as me. I am not alone and I am not different. It is my business how I feel and it is my responsibility to try and get it out in the open - talk and write and pray. I can lean into it by leaning toward positive, gratitude and spiritual connection. I can tell the truth. Except when this dam* drug has me so balled up that I cannot recognize what I fell or even think. That's where you guys come in - the mirrors to help me see. I love you too!
Bill
Sunday, April 26, 2009
Is it in the water?
In the past I have often thought that seldom has something bad happened to me or the people around my life. I know I was minimizing some events - heart attacks, severe back pain, extreme migraines, my own active addiction. Those are all pretty bad for people to go through, but not numerous in my space. I am blessed that around me no murders, car accidents, hurricanes, tornadoes, fires, nobody died in Viet Nam, Iraq nor Afghanistan. No one close to me has gone through any of those extreme life events. I have been fortunate.
Now, recently, past couple years, it seems cancer, hep c, death and heartbreak are so near in the lives around me. The cancer stuff - mine I would not trade with others I know. Pete; Danny; Ham; my sister; Jeff's 1st sponsor. We are so human and life is such a fragile gift that changes and goes away. I have no sense that I am leaving anytime soon - years away. But my perspective sure has changed. My gratitude for those who have and those who still do touch my life is greater than any time past.
Jacki, Kate, my Mom and siblings. My sponsees and sponsors and so many around the rooms who have gifted me. These are my treasures - far surpassing the sum of all the money I tried so hard to make. I am alright, I will be alright, and I have always been alright. It is my life and it is a jewel. So are you.
Bill
Now, recently, past couple years, it seems cancer, hep c, death and heartbreak are so near in the lives around me. The cancer stuff - mine I would not trade with others I know. Pete; Danny; Ham; my sister; Jeff's 1st sponsor. We are so human and life is such a fragile gift that changes and goes away. I have no sense that I am leaving anytime soon - years away. But my perspective sure has changed. My gratitude for those who have and those who still do touch my life is greater than any time past.
Jacki, Kate, my Mom and siblings. My sponsees and sponsors and so many around the rooms who have gifted me. These are my treasures - far surpassing the sum of all the money I tried so hard to make. I am alright, I will be alright, and I have always been alright. It is my life and it is a jewel. So are you.
Bill
Tuesday, April 21, 2009
Itchy humor
After brushing my teeth this morning I looked up and saw this guy with his left arm up and over to the right side just above the ear. Just like an orangutan, scratching. My arms are long, but it was the dorky look that made me laugh. So maybe next time you see me, just reach up & over and scratch. Give us both a smile.
The stuff on my face is not acne - looked pretty much like it. Now however, my nose is better but it is so tender at my hairline that the slightest bump or even shower spray makes it bleed. Now I'm scabby. Tried wearing a hat to cover it up but that made it worse. A really good friend suggested a paper bag but thought that might buy into my too vain need to look good. Remember, I am getting some needed humility out of all this. Cancer ain't all bad. Okay, that wasn't funny.
My sponsor has me writing an angry letter at cancer - get to call it nasty names and press really hard on the pen. I am f'in mad about having cancer - it really ticks me off! He does not want me to end the letter getting all spiritual, just put the anger on paper. No problema. I can do that, but you readers don't get to see it. Well okay, maybe for a price, money is getting short.
A few months ago, before cancer (henceforth BC) I left work and had an obsessive urge to buy. Anything. Something. I did not do it that time but it was a moment of clarity. I have always fixed on retail solutions to how I feel. Looking for something external to change how I feel is so easy to do but too often has consequences I don't want. I have not had a cigarette since March 3, 2006 at 5pm. But recently I have had stronger urges to smoke than any other time since. I don't even bother to ask "Why?" And I do not believe when someone else claims to not know why they do such things. Self sabotage. Sometimes I am not my friend.
That's part of why I write this stuff; writing can help get the sabotage out of my not quite subconscious. Thanks for reading and praying and laughing with me.
Bill
The stuff on my face is not acne - looked pretty much like it. Now however, my nose is better but it is so tender at my hairline that the slightest bump or even shower spray makes it bleed. Now I'm scabby. Tried wearing a hat to cover it up but that made it worse. A really good friend suggested a paper bag but thought that might buy into my too vain need to look good. Remember, I am getting some needed humility out of all this. Cancer ain't all bad. Okay, that wasn't funny.
My sponsor has me writing an angry letter at cancer - get to call it nasty names and press really hard on the pen. I am f'in mad about having cancer - it really ticks me off! He does not want me to end the letter getting all spiritual, just put the anger on paper. No problema. I can do that, but you readers don't get to see it. Well okay, maybe for a price, money is getting short.
A few months ago, before cancer (henceforth BC) I left work and had an obsessive urge to buy. Anything. Something. I did not do it that time but it was a moment of clarity. I have always fixed on retail solutions to how I feel. Looking for something external to change how I feel is so easy to do but too often has consequences I don't want. I have not had a cigarette since March 3, 2006 at 5pm. But recently I have had stronger urges to smoke than any other time since. I don't even bother to ask "Why?" And I do not believe when someone else claims to not know why they do such things. Self sabotage. Sometimes I am not my friend.
That's part of why I write this stuff; writing can help get the sabotage out of my not quite subconscious. Thanks for reading and praying and laughing with me.
Bill
Sunday, April 19, 2009
Duh!!
Okay so writing that post a couple days ago helped snap me out of the funk and into some action. Met with my sponsor, rode my bike, meeting, out and about in spite of the hideous (to me) acne like stuff on my face. The DUH!! comes in because starting the chemo 12 days ago and the effects so far have had an impact on me just like every other new development of my cancer story. It is another change, a new bit of news, it is tough and scary and it threw me for a loop. I felt fear and anger, stuffed it, retreated into my turtle shell and could not move.
Solution? Moving a muscle gives a new thought and changes how I feel. I can do this, chemo is my friend, you guys love me, God is here and together we can get on with "Whuppin' Cancer!" My imagery is the pill is working, breaking down the cancer nodules in my lungs and that putrid stuff is coming out like zits - poison leaving my system. Shrink the lung nodules then cut out the kidney with the baseball tumor on it. That's the plan Stan.
Just a little aside: my sponsor says one of my shortcomings is being too concerned with looking good. The pimples all over my forehead and nose pretty much force me past that glitch in my character. Here I am, zits and all, and I'm still a fine specimen of God's handiwork.
I see the doc tomorrow, following up on how the little white pill is hitting me. Pretty much just as he predicted except no diarrhea so far. Guess none of us should buy stock in Imodium after all.
Bill
Solution? Moving a muscle gives a new thought and changes how I feel. I can do this, chemo is my friend, you guys love me, God is here and together we can get on with "Whuppin' Cancer!" My imagery is the pill is working, breaking down the cancer nodules in my lungs and that putrid stuff is coming out like zits - poison leaving my system. Shrink the lung nodules then cut out the kidney with the baseball tumor on it. That's the plan Stan.
Just a little aside: my sponsor says one of my shortcomings is being too concerned with looking good. The pimples all over my forehead and nose pretty much force me past that glitch in my character. Here I am, zits and all, and I'm still a fine specimen of God's handiwork.
I see the doc tomorrow, following up on how the little white pill is hitting me. Pretty much just as he predicted except no diarrhea so far. Guess none of us should buy stock in Imodium after all.
Bill
Saturday, April 18, 2009
Funky stretch
I don't know how to express what is going on since I started taking "my friend" the chemo pill. There are a few fairly minor side effects, fatigue, more difficulty sleeping, itching and twitchy. The acne like skin stuff on my face and scalp is driving me nuts (short drive). I have a new empathy for teenagers who have bad acne, and I am very self conscious of what others think is wrong.
Yesterday and this morning my vision is a little blurred - feels like when I put gel type eye drops in for my occasional dry eye. Maybe worst is a mental cloud, fuzzy thinking, emotional numbness and feeling disconnected. I am in a funk, probably depression exasperated by the little white pill. I pray & meditate as best I can, ride my bike call people fairly well, take my depression med. All of which have worked so well prior to this chemo.
The funk will pass if I keep doing what has always worked. Lean into it. People ask how I am doing - remember, some really don't want to listen to my real answer, and sometimes I just don't want to tell. The few times I have tried to talk and put it into words, I come up short. Some of it is feeling like I am complain too much and focus too much on the symptoms which near consume my awareness like a toothache. I try to stay away from crying tho' as I write I am dripping I just don;t like going through this and I so miss how my life was before cancer.
I can't work. Too scattered thinking, sporadic and unpredictable fatigue. And I have no answer for "What do you do all day?" I am hitting 4ish meetings a week, doing some step work with sponsees, search for and download music that I may like, take a nap for fatigue, and obsess on the acne like stuff. Wash and lotion, wash and lotion.
All the while trying to keep my attitude up and positive, hopeful, trusting God and just moving one foot after another. I am hanging in and I need your help - I am not doing very well at reaching out right now.
Bill
Yesterday and this morning my vision is a little blurred - feels like when I put gel type eye drops in for my occasional dry eye. Maybe worst is a mental cloud, fuzzy thinking, emotional numbness and feeling disconnected. I am in a funk, probably depression exasperated by the little white pill. I pray & meditate as best I can, ride my bike call people fairly well, take my depression med. All of which have worked so well prior to this chemo.
The funk will pass if I keep doing what has always worked. Lean into it. People ask how I am doing - remember, some really don't want to listen to my real answer, and sometimes I just don't want to tell. The few times I have tried to talk and put it into words, I come up short. Some of it is feeling like I am complain too much and focus too much on the symptoms which near consume my awareness like a toothache. I try to stay away from crying tho' as I write I am dripping I just don;t like going through this and I so miss how my life was before cancer.
I can't work. Too scattered thinking, sporadic and unpredictable fatigue. And I have no answer for "What do you do all day?" I am hitting 4ish meetings a week, doing some step work with sponsees, search for and download music that I may like, take a nap for fatigue, and obsess on the acne like stuff. Wash and lotion, wash and lotion.
All the while trying to keep my attitude up and positive, hopeful, trusting God and just moving one foot after another. I am hanging in and I need your help - I am not doing very well at reaching out right now.
Bill
Sunday, April 12, 2009
It's a beautiful day
Easter, spring, 70s, the day after rain in Arizona. An engineer/physicist/artist beyond my ability to comprehend designed this day and every day. 'twasn't me. But i do get to enjoy it. No matter what else is going on, I can notice the miraculous beauty and power around me. Maybe best of all I got to hang with Jacki all weekend.
Hello Vince. ;-)
Side effects? Six days into the chemo pills, the side effects are fairly mild. Drowsy for couple hours after taking; squiggly/twitchy body feelings; very dry mouth and skin. If my nose gets any redder it will look like and old alcoholics nose. A few zits are appearing on my face - acne like. My attention span seems shorter than ever. Who knows what that's from.
My prayers are simple - asking for God's will and the power to carry it out. Expressing gratitude for Jacki and Kate, my family, my recovery community, and for keeping me clean another day.
Meditation/imaging comes in bits and moments through out the day, breathing and seeing the medicine flowing around the cancer nodules in my lungs, shrinking them .01 millimeter each day.
We rode our bicycles a few miles today, against the wind going and with it coming home. Already some days of the little white pill are against the wind - just lean into it. Thank you.
Bill
Hello Vince. ;-)
Side effects? Six days into the chemo pills, the side effects are fairly mild. Drowsy for couple hours after taking; squiggly/twitchy body feelings; very dry mouth and skin. If my nose gets any redder it will look like and old alcoholics nose. A few zits are appearing on my face - acne like. My attention span seems shorter than ever. Who knows what that's from.
My prayers are simple - asking for God's will and the power to carry it out. Expressing gratitude for Jacki and Kate, my family, my recovery community, and for keeping me clean another day.
Meditation/imaging comes in bits and moments through out the day, breathing and seeing the medicine flowing around the cancer nodules in my lungs, shrinking them .01 millimeter each day.
We rode our bicycles a few miles today, against the wind going and with it coming home. Already some days of the little white pill are against the wind - just lean into it. Thank you.
Bill
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