Almost go! Met with the doc today. Jacki was there by my side thank God. This was one of the very serious, nuts and bolts conversations with the doc. I have been amazed each step of the process, how generous some of these oncologists are with their time with a patient.
He laid out the stats about 3 different drugs that are being tried for "metastasized papillary renal cell carcinoma" - PRCC. He wants to hear from one more colleague about testing another drug, a MET inhibitor, but unless that is a big surprise, we are going with Tarceva. It's a pill taken once a day, every day. I might get acne, I might get diarrhea, I might be tired a lot. Could be none of the above or all of the above. Probably won't lose my hair.
Let me tell you, this was a heavy duty sobering conversation. Of course, you know me; couldn't resist a little humor exchange with the doc. Lightened it up briefly, but these things have a distinctly persistent lack of humor. One of these days I'm going to find some cancer funnies.
So they took blood and scheduled another CT Scan to set a current baseline for measuring chemo's results. I talk with the doc again on Monday, get the script, get the drug and start taking it.
Walking out of there, I felt shaken but not stirred. Jacki being there was a shock absorber. Burden shared is half a burden. Tears were there but soaked up by a sense of determination to be one of the "over 5 year" guys. Cures get developed every year and I am going to be around for the cure for PRCC. Tarceva is my friend, I have dealt with zits before, and I can get large sized Imodium at Costco and I like my naps anyway.
I do not have to deal with it alone. Matter of fact, I could not if I tried. I need you, the reader, my friends, my loved ones, my family and all who, not even knowing me, pray for me anyway. I need my God, my Creator and I pray for the strength and courage to hit it with my best shot!
Right now, it is near the end of my day. I feel tired physically, mentally, emotionally. I have had enough for one day. Call my sponsor, talk with a couple of my guys, cuddle with Jacki, pray and sleep. The biggest mystery here is how could I get through this without you? Thanks.
Bill
Tuesday, March 31, 2009
Sunday, March 29, 2009
Friends
I read somewhere once (therefore it must be true) that men in America have at most two close friends. There was a time in my life when I thought I had three. My definition of close has changed. I often feel the same as back then - I do not fit in, I am different, I am the only one, I am less than. Most of you know that alien feeling. The difference for me today is that because I am able to talk about such feelings and all they bring to the show, I now know none of those feelings are true. Instead I am similar to you and all of us feel those things at times. None of are so different inside no matter the layers of wall.
The people I am able to talk and listen to about those feelings of difference and less than are my friends today. We see what is inside each other and still want to continue being friends. Through thick and thin and often through hurting each other. We are human and to require only pleasant exchange is unrealistic and sets each other up for failure in friendship. Nobody can measure up.
I am not alone in this thing we call life. I have 4 or 5 very closely connected friends. What a gift. Many others understand me when I tell what it is like for me, and I understand what it is like for them. The bond among us is a great treasure. Some have called addiction the disease of relationships because we focus so much on our differences and forget our vast similarities. However, addicts have no corner that dysfunctional delusional dilemma. If I insist only on my difference and you insist only on your difference, then letting each other know we relate to each other is nigh on impossible. We wind up in a very dark place called alone.
The connecting with others path I have been and remain on is an inclusive spiritual path focused on similarities. I think of it as a deep knowing that ALL of us are Children born of whatever God is. We are twins, separated at birth. Listen, tell the truth, breath and touch - relationship skills so simple but so fearsome.
We humans (men in particular?) - shy from those skills obsessively and stay apart from, remaining locker room superficial. We cannot listen because we cannot tell anything real like the truth of what is inside. We cannot breath because we are on guard and our breath is tight. We cannot hug, because what? That might mean we are something we lifelong fear we might be?
Learning I have cancer has kicked me into a new life chapter. I still can tell what is really going on and face scrutiny (pulling my covers) from old friends and some new. God uses them to hold me close and feel connected; I am not alone. What a gift. What grace!
Bill
The people I am able to talk and listen to about those feelings of difference and less than are my friends today. We see what is inside each other and still want to continue being friends. Through thick and thin and often through hurting each other. We are human and to require only pleasant exchange is unrealistic and sets each other up for failure in friendship. Nobody can measure up.
I am not alone in this thing we call life. I have 4 or 5 very closely connected friends. What a gift. Many others understand me when I tell what it is like for me, and I understand what it is like for them. The bond among us is a great treasure. Some have called addiction the disease of relationships because we focus so much on our differences and forget our vast similarities. However, addicts have no corner that dysfunctional delusional dilemma. If I insist only on my difference and you insist only on your difference, then letting each other know we relate to each other is nigh on impossible. We wind up in a very dark place called alone.
The connecting with others path I have been and remain on is an inclusive spiritual path focused on similarities. I think of it as a deep knowing that ALL of us are Children born of whatever God is. We are twins, separated at birth. Listen, tell the truth, breath and touch - relationship skills so simple but so fearsome.
We humans (men in particular?) - shy from those skills obsessively and stay apart from, remaining locker room superficial. We cannot listen because we cannot tell anything real like the truth of what is inside. We cannot breath because we are on guard and our breath is tight. We cannot hug, because what? That might mean we are something we lifelong fear we might be?
Learning I have cancer has kicked me into a new life chapter. I still can tell what is really going on and face scrutiny (pulling my covers) from old friends and some new. God uses them to hold me close and feel connected; I am not alone. What a gift. What grace!
Bill
Thursday, March 26, 2009
De Plane, Boss, De Plane
Well, I guess we are coming out of holding pattern. The plane is landing. Specialist's nurse called today to schedule me for decision making on Tuesday. Sounds like we are going with a chemo drug called Tarceva aka Erlotinib. It's a pill form taken once per day. Tarceva is approved for lung and pancreatic, but is still being tested for papillary kidney cancer.
At this point I will just be glad to get it going, see how the side effects are, and see how well it works. But first, Jacki and I are going next weekend for a much needed break, away to a friend's cabin in the woods. Thank you C.
I am a bit numb and not very in touch with what I feel. Grief maybe? Losing my livelihood. Losing conversations I used to have that were not "organ recitals". Losing any last remnants of the delusion that I am invulnerable and super duper. My life has dramatically changed and I miss the previous chapter. Missing and loss- I think that is grief. Let's see what Daniel W. says,
GRIEF:
"a: deep and poignant distress caused by or as if by bereavement b: a cause of such suffering
synonyms: see sorrow
Yup, cancer is giving me grief! I can sure relate to distress and sorrow seems closely related to sad, which I feel some of multiple times a day. That's what tears are for and I have shed 'em plenty. Talking and writing about the sad and trying to see the grief helps too. Thanks for listening.
Now, I have two requests:
1. Do not look at me nor think of me as dying. That's not what I am doing - dying. I choose to live.
2. God gave me (and you) an imagination, and I want us all to use it to heal, not just me, but ourselves and our loved ones. I want you to pray, you bet. But I also want you to imagine whatever it is that God sends or gives to heal. My imagining is a blue sparkly ball of light that swirls counter clockwise around me, up and down me and through me. It comes from on high and is my personal imaging of the healing coming my way from my awesome God. If you can imagine (using that God given gift), please believe your prayer is working and see that blue sparkling swirl of light. Thank you for sending me some of your imagined healing!
Bill
At this point I will just be glad to get it going, see how the side effects are, and see how well it works. But first, Jacki and I are going next weekend for a much needed break, away to a friend's cabin in the woods. Thank you C.
I am a bit numb and not very in touch with what I feel. Grief maybe? Losing my livelihood. Losing conversations I used to have that were not "organ recitals". Losing any last remnants of the delusion that I am invulnerable and super duper. My life has dramatically changed and I miss the previous chapter. Missing and loss- I think that is grief. Let's see what Daniel W. says,
GRIEF:
"a: deep and poignant distress caused by or as if by bereavement b: a cause of such suffering
synonyms: see sorrow
Yup, cancer is giving me grief! I can sure relate to distress and sorrow seems closely related to sad, which I feel some of multiple times a day. That's what tears are for and I have shed 'em plenty. Talking and writing about the sad and trying to see the grief helps too. Thanks for listening.
Now, I have two requests:
1. Do not look at me nor think of me as dying. That's not what I am doing - dying. I choose to live.
2. God gave me (and you) an imagination, and I want us all to use it to heal, not just me, but ourselves and our loved ones. I want you to pray, you bet. But I also want you to imagine whatever it is that God sends or gives to heal. My imagining is a blue sparkly ball of light that swirls counter clockwise around me, up and down me and through me. It comes from on high and is my personal imaging of the healing coming my way from my awesome God. If you can imagine (using that God given gift), please believe your prayer is working and see that blue sparkling swirl of light. Thank you for sending me some of your imagined healing!
Bill
Wednesday, March 25, 2009
Holding pattern . . .
Wow, I read the previous blog and think, "What was I thinking?" it seems pretty jumbled up to me and didn't nail whatever I was feeling at the time. The last few days have seemed like a holding pattern, circling the runway looking for a place to land. My doctor is looking for the chemicals to put in my body with the most likely positive impact on the rogue cells we call cancer.
With help from some of you, I have found and read a few studies and trials of various drugs that may have some impact on my type of cancer. None seem conclusive or very specific about results. I really do get to be a guinea pig. Today I will reach out to my doc to squeak the wheel gently and remind him I am here awaiting his perusal of his network's replies to his query about what new drugs are working best.
Too many "what ifs" are running around in my head, Reminds me of playing Ms Pacman obsessively like I did in the 80s resulting in carpel tunnel in my right hand. I'm getting carpal brain. Every thought is elusive and I cannot get a grip on any of them. Frustrating, depressing, go ride my bike anyway.
My job ended yesterday. I have not been able to work at all since early January and I cannot focus enough to do it now. For most of over 20 years I have done executive recruiting, headhunting. It requires sticking with specific projects over weeks and months, consistently immersed in specific kinds of positions in specific industry. The economy has not helped, and so many medical appts, "carpal brain" and chemo coming prevent me being able to work. WTF do I do now?
Bill
With help from some of you, I have found and read a few studies and trials of various drugs that may have some impact on my type of cancer. None seem conclusive or very specific about results. I really do get to be a guinea pig. Today I will reach out to my doc to squeak the wheel gently and remind him I am here awaiting his perusal of his network's replies to his query about what new drugs are working best.
Too many "what ifs" are running around in my head, Reminds me of playing Ms Pacman obsessively like I did in the 80s resulting in carpel tunnel in my right hand. I'm getting carpal brain. Every thought is elusive and I cannot get a grip on any of them. Frustrating, depressing, go ride my bike anyway.
My job ended yesterday. I have not been able to work at all since early January and I cannot focus enough to do it now. For most of over 20 years I have done executive recruiting, headhunting. It requires sticking with specific projects over weeks and months, consistently immersed in specific kinds of positions in specific industry. The economy has not helped, and so many medical appts, "carpal brain" and chemo coming prevent me being able to work. WTF do I do now?
Bill
Monday, March 23, 2009
How to ID an emotion?
Mad, sad, glad, scared and excited. 5 basic emotions. Many many variations and other "specialty" emotions. How about joy, surprise, disgust, zest, anticipation, awe, Take the emotion "love" for example with subset emotions like: adore, fond, affectionate, attraction, like, caring, tenderness, sentimental. It gets complicated quickly for me. Not just me as exemplified by those little faces charts naming all the feelings.
I seem to do better keeping it simpler, difficult as that can be. How about just love, sad, afraid, joy. But then there are the jumbled up varieties and combinations. Scared and excited two sides of the same coin. Mad/sad/scared/grateful/accepting - now there is a combo underlying most waking moments for me recently. It is hard for me to separate them from each other. Sad and grateful at the same time - how does that work? I often cry feeling sadness, but am I also crying out of fear? Fear of what? Maybe that last question is the crux of what I am really trying to write about.
My sponsor asked me today if I feel right with my God. Do I feel the need to do something to get right with God? We talked about faith, belief, spirituality. In recovery, each meeting, we read "regardless of age, race, sexual identity, creed religion or lack of religion." All are welcome into recovery with just a desire to be here. Seems to me that regardless of the spiritual path we walk we all get to the same place ultimately - in the lap or grace or presence or heaven or heart of God. Even if we just get dead, I figure I must live my life the same way. Do justice, love kindness and walk humbly.
I know why I am alive instead of dead as logically I would have been back in 1992. I am alive because my God wants me to touch the lives of others who suffer from my other disease, my primary disease, the disease of addiction. God gave me the "super power" and the instructions to help other addicts like me, who it turns out, have the same super power. I have been following that instruction as my primary purpose, my raison d'etre, to the best of my ability. God likes that! Cancer does not stop that. Just for today, deep inside to the molecular level I feel right with God and need not be afraid about what will happen when this is all done.
Bill
I seem to do better keeping it simpler, difficult as that can be. How about just love, sad, afraid, joy. But then there are the jumbled up varieties and combinations. Scared and excited two sides of the same coin. Mad/sad/scared/grateful/accepting - now there is a combo underlying most waking moments for me recently. It is hard for me to separate them from each other. Sad and grateful at the same time - how does that work? I often cry feeling sadness, but am I also crying out of fear? Fear of what? Maybe that last question is the crux of what I am really trying to write about.
My sponsor asked me today if I feel right with my God. Do I feel the need to do something to get right with God? We talked about faith, belief, spirituality. In recovery, each meeting, we read "regardless of age, race, sexual identity, creed religion or lack of religion." All are welcome into recovery with just a desire to be here. Seems to me that regardless of the spiritual path we walk we all get to the same place ultimately - in the lap or grace or presence or heaven or heart of God. Even if we just get dead, I figure I must live my life the same way. Do justice, love kindness and walk humbly.
I know why I am alive instead of dead as logically I would have been back in 1992. I am alive because my God wants me to touch the lives of others who suffer from my other disease, my primary disease, the disease of addiction. God gave me the "super power" and the instructions to help other addicts like me, who it turns out, have the same super power. I have been following that instruction as my primary purpose, my raison d'etre, to the best of my ability. God likes that! Cancer does not stop that. Just for today, deep inside to the molecular level I feel right with God and need not be afraid about what will happen when this is all done.
Bill
Sunday, March 22, 2009
It's been a year
It's our anniversary. Jacki and I have been married 1 year as of today. I made her coffee. She got the paper. We met in our room, let the sun in. I opened my favorite newspaper section and found her card to me. I had put her card in the comics. The cards were touching, prompting a few intimate (into-me-you-see) moments of joy and love deeper than I have ever experienced. So then we did our morning before we get up for good ritual - work the sudoku puzzle together. Intimacy is made of small things.
Brunch soon with family. Wish the Kansas crew were here as well. Love you all, recovery family and family family. Today is for the two of us to enjoy like a pink cloud, sucking it for all its worth. What cancer?
Bill
Brunch soon with family. Wish the Kansas crew were here as well. Love you all, recovery family and family family. Today is for the two of us to enjoy like a pink cloud, sucking it for all its worth. What cancer?
Bill
Saturday, March 21, 2009
Technical stuff
Here's the best technical info site I have so far found, and here is my favorite part:
Prognosis overall 5-yr survival rate around 85%
www.atlasgeneticsoncology.org/Genes/PRCCID69.html
Still awake? Way over my head, but I like the prognosis line.
Bill
Prognosis overall 5-yr survival rate around 85%
www.atlasgeneticsoncology.org/Genes/PRCCID69.html
Still awake? Way over my head, but I like the prognosis line.
Bill
Friday, March 20, 2009
the diagnosis
Papillary Renal Cell Carcinoma (PRCC) metastasized into the lungs. There it is. A bit different than Mayo clinic came up with, but now I have two other opinions in agreement with each other. This one was pin pointed by a "world known" kidney cancer pathologist. About 10% of kidney cancer is PRCC. The papillary type of cell, especially when it has metastasized, responds poorly to most types of chemo treatment, so I am headed to the investigatory and experimental treatments. Helping the medical community in the "practice" of medicine. Service work ingrained here.
Can't say I am happy with this diagnosis - I feel sad. AND, it is the hand I've been dealt and I can bluff. Still have years to go.
I have thoughts (and maybe some real or perceived pressure from others)about how I am supposed to feel and deal with this 3 month old health issue. Shouldn't I be able to suck it up and get on with my daily routines? Shouldn't I be positive, accepting and spiritual more of the time instead of ebbing into regular funks? I ought to get back to work as though nothing is wrong. I shouldn't be afraid if I really trust God. I oughta be happy I am not in so many other peoples' shoes. Shoulda, coulda woulda, oughta. Throw in some what ifs.
Intellectually I know I get to just feel what this is like and do the best I can on a daily basis. My ego, my sense of manhood, my self esteem are all taking a hammering. Humility, surrender, faith, trust and acceptance eke out of every hour AND all the doubts and fears do as well. The roller coaster continues, but a little slower and fewer stomach dropping dives.
The specialist I am going to has cast his net to the kidney cancer research and advanced medicine community for the latest trials showing some success. Because my case is unusual, some researchers want me in their groups. Hopefully that net will bring in a couple big fish. Give it a week or so to sort through the information gathering and then I will talk with my guy again about treatment strategy. More waiting. More time to adjust to this new part of my life and get more involved with some of the subjective parts I can to play. Thank you for being in this with me.
Bill
Can't say I am happy with this diagnosis - I feel sad. AND, it is the hand I've been dealt and I can bluff. Still have years to go.
I have thoughts (and maybe some real or perceived pressure from others)about how I am supposed to feel and deal with this 3 month old health issue. Shouldn't I be able to suck it up and get on with my daily routines? Shouldn't I be positive, accepting and spiritual more of the time instead of ebbing into regular funks? I ought to get back to work as though nothing is wrong. I shouldn't be afraid if I really trust God. I oughta be happy I am not in so many other peoples' shoes. Shoulda, coulda woulda, oughta. Throw in some what ifs.
Intellectually I know I get to just feel what this is like and do the best I can on a daily basis. My ego, my sense of manhood, my self esteem are all taking a hammering. Humility, surrender, faith, trust and acceptance eke out of every hour AND all the doubts and fears do as well. The roller coaster continues, but a little slower and fewer stomach dropping dives.
The specialist I am going to has cast his net to the kidney cancer research and advanced medicine community for the latest trials showing some success. Because my case is unusual, some researchers want me in their groups. Hopefully that net will bring in a couple big fish. Give it a week or so to sort through the information gathering and then I will talk with my guy again about treatment strategy. More waiting. More time to adjust to this new part of my life and get more involved with some of the subjective parts I can to play. Thank you for being in this with me.
Bill
Thursday, March 19, 2009
Maybe tomorrow, maybe not
Hard to not dwell (obsess?) on news or not news tomorrow. Couldn't sleep much last night. Hope tonight is better. Let's get the show on the road - let's get chemo started. Be scientific or flip a coin, I'm ready. Okay, maybe a scientific flip figuring the odds over 10,000 flips. Pleasant dreams to all.
Bill
Bill
Wednesday, March 18, 2009
Hunkered down until . . .
That's some of what I have been - hunkered down, until yesterday. Feeling in the dark and wanting info from the kidney cancer specialist, I called to make an appt instead of just waiting some more. His office got me in same day, yesterday. He was quite up to speed and called the pathology office at UofA while I was in his office to get the latest. Seems that pathologists need actual tissue sample rather than the already stained and analyzed slides of someone else' work. Mayo Clinic had showed him 3 slides of their stains; we want the rocket science pathologist to do his own stains and analysis work. Results Friday or Monday.
A little bit of good news about treating the more difficult of the two likely types of cells the experts are considering as the culprit: the latest chemical to be tried is showing a 10 - 20% remission rate, and a much greater percentage of stopping growth of new cancer cells. I could give you all the technical jargon, but get it wrong, so I just gave you the English version.
Driving home was tough; tears rolled for the first time in 10 days or so. The sadness of loss and fear of the unknown washed over me like a big ocean wave. No tsunami, just washing crap off the deck. The crap seems to have been denial, lethargy, stuffing and wanting to blame someone (like the doctor). I did a little praying while driving and got the thought, "Ride my bike!" Hadn't pedaled yet this year.
Rode through the neighborhoods so familiar from past rides, but aimlessly until I remembered the little courtyard by the music building at ASU. It has a fountain. It's almost an automatic meditation, hidden away place. That's where I went and sat for 15 - 20 minutes, listening to god's little gift of built in meditation, my breathing. Slow, slow, deep deep, swelling my belly first then my chest. Long, slow, easy, breathing in God with healthy healing oxygen and exhaling cancer, swirling a blue (this time) healing light around my torso, head and then whole self.
I don't do meditation perfectly, but this time took me to that place of serenity and peace. It lasted half way back home, and I will accept that short term gift. I have not been able to get to that meditative state in months. Came home and planted flowers - something I enjoy but have done too little of this year. This morning they already are opening to the sun giving me a little miracle to watch.
"There are only two ways to live your life: one as though nothing is a miracle; the other is as though everything is a miracle." So said Albert Einstein. I am a miracle. You are a miracle. And so is "Whuppin'" this cancer. Please help me.
Bill
A little bit of good news about treating the more difficult of the two likely types of cells the experts are considering as the culprit: the latest chemical to be tried is showing a 10 - 20% remission rate, and a much greater percentage of stopping growth of new cancer cells. I could give you all the technical jargon, but get it wrong, so I just gave you the English version.
Driving home was tough; tears rolled for the first time in 10 days or so. The sadness of loss and fear of the unknown washed over me like a big ocean wave. No tsunami, just washing crap off the deck. The crap seems to have been denial, lethargy, stuffing and wanting to blame someone (like the doctor). I did a little praying while driving and got the thought, "Ride my bike!" Hadn't pedaled yet this year.
Rode through the neighborhoods so familiar from past rides, but aimlessly until I remembered the little courtyard by the music building at ASU. It has a fountain. It's almost an automatic meditation, hidden away place. That's where I went and sat for 15 - 20 minutes, listening to god's little gift of built in meditation, my breathing. Slow, slow, deep deep, swelling my belly first then my chest. Long, slow, easy, breathing in God with healthy healing oxygen and exhaling cancer, swirling a blue (this time) healing light around my torso, head and then whole self.
I don't do meditation perfectly, but this time took me to that place of serenity and peace. It lasted half way back home, and I will accept that short term gift. I have not been able to get to that meditative state in months. Came home and planted flowers - something I enjoy but have done too little of this year. This morning they already are opening to the sun giving me a little miracle to watch.
"There are only two ways to live your life: one as though nothing is a miracle; the other is as though everything is a miracle." So said Albert Einstein. I am a miracle. You are a miracle. And so is "Whuppin'" this cancer. Please help me.
Bill
Sunday, March 15, 2009
A day like this . . .
Today is another day before news is likely. So far since learning I have cancer, the day before news has always been a difficult day fraught with expectation, fear and some manic-like up and down. Today has not been quite as strong in those respects as before. Probably because I do not have an appt for getting news, just that the doc coming back from the conference might have news from the pathologist. Might, could, possibly - all forms of hope, and somewhat today followed soon with fear and what if. Quite likely I won't get any news. At least the picket fence I sit astraddle has flatter, rounder, almost okay to sit on slats than a few days ago. Hope.
Have I recently said thanks for reading this stuff, calling, encouraging and even asking for my help? You have all helped more than you can know. Often I talk with others with cancer or other health challenges, who have little or no support, encouragement or listeners available. I see others with so much tougher situations. Makes me appreciate you and feel great gratitude. Thank you! Could we all pray harder?
Bill
Have I recently said thanks for reading this stuff, calling, encouraging and even asking for my help? You have all helped more than you can know. Often I talk with others with cancer or other health challenges, who have little or no support, encouragement or listeners available. I see others with so much tougher situations. Makes me appreciate you and feel great gratitude. Thank you! Could we all pray harder?
Bill
Saturday, March 14, 2009
God's time, Doctor's time, not my time
Wow! What a ride! Along about Tuesday I started getting antsy about getting news from the "Rocket Science" pathologist. The kidney cancer specialist who told me he could get the pathologist to get it done in a couple days was ummmmmm - overly optimistic? So by Wed I was really impatient and by Thursday I was resentful and dreamed about TPing (or burning) his house. How dare he keep me in limbo. Then I learned he was already at a conference in Chicago.
So,I get to practice acceptance, patience, forgiveness and just plain being realistic. Too many things would need to have fallen in place to get that pathology analysis done and delivered to the specialist then to me that quickly. Okay, it will be done when it is done and I have very little to say about when. Duh!
The good news is that we have heard from two different sources that the specialist is among the very best at my category of cancer. Probably well worth waiting for.
Going through this serious illness process has skewed me into thinking way too much about myself and thinking my condition is worse than, more important than anyone else' situation. However, all around me people are showing up with serious stuff. Maybe it's in the water. One guy said it must be Alkaida. Lots of humor in these "organ recital" conversations. My life before cancer I am calling "BC" and it is unbelievable how oblivious I must have been to people around me going through serious health problems.
Compassion means "sympathetic consciousness of others' distress together with a desire to alleviate it". BC I was very short on that consciousness, almost not even noticing. Well, I notice now!!!
Bill
So,I get to practice acceptance, patience, forgiveness and just plain being realistic. Too many things would need to have fallen in place to get that pathology analysis done and delivered to the specialist then to me that quickly. Okay, it will be done when it is done and I have very little to say about when. Duh!
The good news is that we have heard from two different sources that the specialist is among the very best at my category of cancer. Probably well worth waiting for.
Going through this serious illness process has skewed me into thinking way too much about myself and thinking my condition is worse than, more important than anyone else' situation. However, all around me people are showing up with serious stuff. Maybe it's in the water. One guy said it must be Alkaida. Lots of humor in these "organ recital" conversations. My life before cancer I am calling "BC" and it is unbelievable how oblivious I must have been to people around me going through serious health problems.
Compassion means "sympathetic consciousness of others' distress together with a desire to alleviate it". BC I was very short on that consciousness, almost not even noticing. Well, I notice now!!!
Bill
Thursday, March 12, 2009
Grief and waiting
It has been difficult for me to write this week - I think I have done the blog less than any week since I started to write. It remains one of the most helpful actions I do for my healing - gets the stuff out onto the table. Still, this week I have felt in limbo, waiting for the kidney cancer specialist who said I would hear by yesterday or today. Have not heard. My hunch is that he is waiting on the pathologist at UofA Med Center, but the guy really ought to tell me. Tell me yes, tell me no, just don't leave me in the dark!
Gosh, could it be I get to practice patience? Will this happen IGT or IDT (in doctors time)? Just not in my time - I still want what I want right now! Don't they know who I am? Yes, I have been spoiled by all the previous doctors and specialists since Jan 6. They all got back to me within a couple days. This week of waiting may be more typical of how we receive medical attention. Typical does not mean it's easy. I am somewhat resigned to the fact that I will get news from pathology when it is ready and I must get over it.
The grief part? Just today I had one of those epiphanies. My life before 2009 is changed forever - some parts are gone, and I miss them. Ability to work consistently. Going to a doctor just once a year. Going more than a day without crying. House hunting, planning big trips with Jacki. Riding my bicycle until the wheels fall off. Stamina to be vertical more than 3 hours consecutively. Thinking because I quit smoking and got very active physically that I would live to 95.
Those and so many more aspects of my life are gone and I miss them greatly I grieve and weep. I was not aware of that grief before today - it was not labeled in my brain, it was just an unidentified flying object in my heart and psyche. I felt something very heavy and did not know it enough to put it into words. Thank God for the help, understanding and insight of people who love. I'm in the forest and did not see the tree branch that kept whopping me up side of the head.
So, my ego is a little bruised ( I should have known!), but my heart is more at ease.
My good friend in San Diego lost his sponsor yesterday. A sponsor is a man who makes such an impact as to be held in a spot inside where very few other humans have ever even been. A sponsor changes our life for better in ways never dreamed. A sponor can walk us through the darkness because he has been there before an knows the way through. A sponsor helps a troubled and angry man become a kind and loving man. Kevin, I love you my Brother and I am sorry for your loss!
BillG
Gosh, could it be I get to practice patience? Will this happen IGT or IDT (in doctors time)? Just not in my time - I still want what I want right now! Don't they know who I am? Yes, I have been spoiled by all the previous doctors and specialists since Jan 6. They all got back to me within a couple days. This week of waiting may be more typical of how we receive medical attention. Typical does not mean it's easy. I am somewhat resigned to the fact that I will get news from pathology when it is ready and I must get over it.
The grief part? Just today I had one of those epiphanies. My life before 2009 is changed forever - some parts are gone, and I miss them. Ability to work consistently. Going to a doctor just once a year. Going more than a day without crying. House hunting, planning big trips with Jacki. Riding my bicycle until the wheels fall off. Stamina to be vertical more than 3 hours consecutively. Thinking because I quit smoking and got very active physically that I would live to 95.
Those and so many more aspects of my life are gone and I miss them greatly I grieve and weep. I was not aware of that grief before today - it was not labeled in my brain, it was just an unidentified flying object in my heart and psyche. I felt something very heavy and did not know it enough to put it into words. Thank God for the help, understanding and insight of people who love. I'm in the forest and did not see the tree branch that kept whopping me up side of the head.
So, my ego is a little bruised ( I should have known!), but my heart is more at ease.
My good friend in San Diego lost his sponsor yesterday. A sponsor is a man who makes such an impact as to be held in a spot inside where very few other humans have ever even been. A sponsor changes our life for better in ways never dreamed. A sponor can walk us through the darkness because he has been there before an knows the way through. A sponsor helps a troubled and angry man become a kind and loving man. Kevin, I love you my Brother and I am sorry for your loss!
BillG
Wednesday, March 11, 2009
. . and waiting
Feels like I am standing in a long line for a movie I don't even want to see. A fellow cancered person suggested recently that I start viewing chemo as my friend trying to help me. At this point I am at least hoping to finally get introduced to this "friend".
Before this disease entered my picture, my sponsor helped nail me on a previously unrecognized character defect - self importance. I still have difficulty spotting this one, but I know it is there. For some of you who do not understand already, a defect of character is one of the ways we can keep others at arms length, keep walls up, get rid of friends and wives. Maybe most harmful of all, they serve to keep me disconnected from God.
Self importance for me sits in a group including controlling (regulating you), self centered (thinking mostly about me), impatient, intolerant, closed minded, judgmental etc. In general, they are variations of fear - you might laugh at me, reject me, abandon me, hurt me or spot me for the fraud I am. Remember, I did not say those fears are rational, accurate or even likely assessments of reality. Those fears come from that deep sense that I am not enough, arguing with I am a beautiful child of God. More accurately I am enough just as I am, not perfect, just on the way.
So, self importance. My cancer is worse than yours. the doc should address my health first, putting me at the front of the line. Telling you about me but not listening about you. Interrupting when you attempt to share your own experience with life threatening health issues. You should listen to me, because I can tell you like it is. I am not always practicing self importance, but I must get to where I can put my problem into a more accurate perspective. Many people suffer from similar issues and their pain and fear is just as valid as mine. I am not unique.
I wait again today for news from the "rocket science" pathologist about exactly (hopefully) what kind of cancer cells are attacking my kidney and lungs. Apparently there a jillion types of cancer, many requiring a different kind of treatment with differing success rates. Getting this far in the diagnosis process has been difficult in part because the two possible types of cells are tough to differentiate, hence the specialized kidney cancer pathologist. Now I wish upon a star . . .
Bill
Before this disease entered my picture, my sponsor helped nail me on a previously unrecognized character defect - self importance. I still have difficulty spotting this one, but I know it is there. For some of you who do not understand already, a defect of character is one of the ways we can keep others at arms length, keep walls up, get rid of friends and wives. Maybe most harmful of all, they serve to keep me disconnected from God.
Self importance for me sits in a group including controlling (regulating you), self centered (thinking mostly about me), impatient, intolerant, closed minded, judgmental etc. In general, they are variations of fear - you might laugh at me, reject me, abandon me, hurt me or spot me for the fraud I am. Remember, I did not say those fears are rational, accurate or even likely assessments of reality. Those fears come from that deep sense that I am not enough, arguing with I am a beautiful child of God. More accurately I am enough just as I am, not perfect, just on the way.
So, self importance. My cancer is worse than yours. the doc should address my health first, putting me at the front of the line. Telling you about me but not listening about you. Interrupting when you attempt to share your own experience with life threatening health issues. You should listen to me, because I can tell you like it is. I am not always practicing self importance, but I must get to where I can put my problem into a more accurate perspective. Many people suffer from similar issues and their pain and fear is just as valid as mine. I am not unique.
I wait again today for news from the "rocket science" pathologist about exactly (hopefully) what kind of cancer cells are attacking my kidney and lungs. Apparently there a jillion types of cancer, many requiring a different kind of treatment with differing success rates. Getting this far in the diagnosis process has been difficult in part because the two possible types of cells are tough to differentiate, hence the specialized kidney cancer pathologist. Now I wish upon a star . . .
Bill
Tuesday, March 10, 2009
Waiting
Two days of waiting - like straddling a picket fence with short legs. It's not comfortable, I don't like it and there's nothing I can do about it. Squeak the pathology office wheel tomorrow.
Bill
Bill
Sunday, March 8, 2009
Gnawing fear, resentment & anger
Every other day or so recently I have had a gnawing sense of doom right before wakening. In that twilight half awake, half asleep zone. It seems to have the resentment or anger that came at the same stage of awake/sleep regularly a few weeks ago. The resentments were crazy - some from 2nd grade of old ones that receded or ebbed with forgiveness, but apparently not totally dealt with years ago.
I do not know why these negative pre-thoughts come at such a time, that half awake. They spring I suppose from fear of the unknown diagnosis or prognosis or news to come perhaps the ext day. Not on the day of some newsy appointment like tomorrow, but the day before. Go ahead and tell me it is okay to feel these things - it's natural, human and understandable. Or, tell me I "should" feel some other way or focus on the positive. The fact is this fear based stuff just hits me, swamps me some days and it really sucks. On the edge but not quite crying - a lump in my throat over 27.62 different moments during the day.
This morning I dreamed/awoke with those feelings. I prayed my favorite prayers asking for help. The feeling waned and I started my day. I had brunch with family and the conversation was lively but also edging close to arguing. Most of my life I have enjoyed such interchange with friendly disagreement. Today, and often lately, such small clashes of ideas bang my thin - I don't know what to call it. The rest of the day has been tired, too long nap, willing and dressing for bike ride, changing my mind, edging on tears and burping bacon from brunch. I read yesterday's blog and quickly see the swung pendulum.
I hope for news from the rocket science pathologist tomorrow, but realistically it will come Tuesday or Wed - maybe even Thu. Probably tomorrow I will settle in a bit more and be able to relax, focus for more than 42 seconds, and step out of what seems like trapped in a shell. Even as I write that, my head discounts it with all the people with bigger problems, and there are so many such people. Looking back on this day, I have thought near continuously of me myself and I. Some days are just like that and they suck.
Tomorrow I will go to a meeting and take an old mostly blind guy to buy a bigger TV - he wants it, can afford it and I can help. Thanks.
Bill
I do not know why these negative pre-thoughts come at such a time, that half awake. They spring I suppose from fear of the unknown diagnosis or prognosis or news to come perhaps the ext day. Not on the day of some newsy appointment like tomorrow, but the day before. Go ahead and tell me it is okay to feel these things - it's natural, human and understandable. Or, tell me I "should" feel some other way or focus on the positive. The fact is this fear based stuff just hits me, swamps me some days and it really sucks. On the edge but not quite crying - a lump in my throat over 27.62 different moments during the day.
This morning I dreamed/awoke with those feelings. I prayed my favorite prayers asking for help. The feeling waned and I started my day. I had brunch with family and the conversation was lively but also edging close to arguing. Most of my life I have enjoyed such interchange with friendly disagreement. Today, and often lately, such small clashes of ideas bang my thin - I don't know what to call it. The rest of the day has been tired, too long nap, willing and dressing for bike ride, changing my mind, edging on tears and burping bacon from brunch. I read yesterday's blog and quickly see the swung pendulum.
I hope for news from the rocket science pathologist tomorrow, but realistically it will come Tuesday or Wed - maybe even Thu. Probably tomorrow I will settle in a bit more and be able to relax, focus for more than 42 seconds, and step out of what seems like trapped in a shell. Even as I write that, my head discounts it with all the people with bigger problems, and there are so many such people. Looking back on this day, I have thought near continuously of me myself and I. Some days are just like that and they suck.
Tomorrow I will go to a meeting and take an old mostly blind guy to buy a bigger TV - he wants it, can afford it and I can help. Thanks.
Bill
Saturday, March 7, 2009
2 way street
Ever notice how giving always results in receiving more than was given? I awoke this morning leaning toward a woe is me day. One of my guys came over as scheduled to do step work. For 1 1/2 hours both of us forgot all about cancer. and I was left with that profound gratitude for being alive, living my life instead of dying my life, and still being very useful in God's work selected for me.
What a gift it is experiencing the fact that no matter what I am going through I can still be useful. I am not in charge and my job is to be willing to help another human being. Even at my worst somehow what I am is useful to someone. I can still pick up one starfish at a time and throw it back into the sea. Maybe make a difference by expressing one single act of love.
Right this moment it seems I am moving into a stage of experiencing more acceptance. More of the time since early January I can see a half full glass. Of course I will still go up and down in this process and the accompanying emotions. But still, I know I do not have to do this alone. I could not do it alone, and trying to do so will just make it worse. Trying to do it alone would be insane, and there is an alternative - a solution. And that is including my God, you and the doctors - together we are a power greater than the hell this disease could be. Thank you for being such a big part of that huge power.
Bill
What a gift it is experiencing the fact that no matter what I am going through I can still be useful. I am not in charge and my job is to be willing to help another human being. Even at my worst somehow what I am is useful to someone. I can still pick up one starfish at a time and throw it back into the sea. Maybe make a difference by expressing one single act of love.
Right this moment it seems I am moving into a stage of experiencing more acceptance. More of the time since early January I can see a half full glass. Of course I will still go up and down in this process and the accompanying emotions. But still, I know I do not have to do this alone. I could not do it alone, and trying to do so will just make it worse. Trying to do it alone would be insane, and there is an alternative - a solution. And that is including my God, you and the doctors - together we are a power greater than the hell this disease could be. Thank you for being such a big part of that huge power.
Bill
Friday, March 6, 2009
3rd opinion effort . . .
Let's see . . . how to put this into just a few lines . . . The doc yesterday is a kidney cancer specialist dialed in to the extensive network of researchers doing work in kidney related cancers. What variation of cancer cells respond to what specific chemo drugs, some it's best to remove the kidney some not. He leans to possibility that Mayo and 2nd opinion doc are both close to bulls eye diagnosis. Plan from here is to send the biopsy slides to a rocket science pathologist at UofA who is the guy most of those researchers use when they really need to nail down a difficult case. I guess I am one of those.
I don't know if I am getting used to the ride or impatient or into acceptance or what I am feeling or will feel next. Lots of iffs here and it is abundantly clear that I am not in charge. The good news is that 3rd opinion doc sees no reason to predict only 2 years, but rather could be many years. So I am going with that picture and feel more hopeful than before seeing him yesterday.
The new pathology stuff will happen in the next few days. The suspense continues. It sucks not knowing but sitting in my chair sure isn't boring.
Bill
I don't know if I am getting used to the ride or impatient or into acceptance or what I am feeling or will feel next. Lots of iffs here and it is abundantly clear that I am not in charge. The good news is that 3rd opinion doc sees no reason to predict only 2 years, but rather could be many years. So I am going with that picture and feel more hopeful than before seeing him yesterday.
The new pathology stuff will happen in the next few days. The suspense continues. It sucks not knowing but sitting in my chair sure isn't boring.
Bill
Thursday, March 5, 2009
Each new step . . .
Since January 7 when this seemingly interminable process of diagnosis started, each new step has been highly stressful the day before. Some steps more than others. The "bad news" steps have of course been a kick in the head immediately after, but I am feeling the pre stress right now. I have an appt with 3rd opinion doctor in 3 hours, and I am a bit wound up - tight in the shoulders, back, and around the eyes and my tongue just will not loll in the bottom of my mouth. My mind is spinning like the globe going from light to dark.
I have not written much about the human rock of support walking beside me every step of the way. This is as tough on Jacki as it is on me. Still she walks beside me with a love I have difficulty even imagining. Her eyes are so beautiful and I am filled up each time she turns them on me - shining, hopeful and full of love and acceptance.
I talk about her frequently. It is easy to use words that lift her up in the eyes of others: Intelligent; skilled; compassionate; “her 11th step kicks my a**; “She lives this Program.” “She sets her boundaries”; “speaks her mind” and “stands up for herself”. “She can dish it as well as take it.” “She makes me a better man.” Maybe the most important thing I can say is she is an authentically spiritual woman who eccentrically walks as she talks letting us know we can do it too. And I love her.
Bill
I have not written much about the human rock of support walking beside me every step of the way. This is as tough on Jacki as it is on me. Still she walks beside me with a love I have difficulty even imagining. Her eyes are so beautiful and I am filled up each time she turns them on me - shining, hopeful and full of love and acceptance.
I talk about her frequently. It is easy to use words that lift her up in the eyes of others: Intelligent; skilled; compassionate; “her 11th step kicks my a**; “She lives this Program.” “She sets her boundaries”; “speaks her mind” and “stands up for herself”. “She can dish it as well as take it.” “She makes me a better man.” Maybe the most important thing I can say is she is an authentically spiritual woman who eccentrically walks as she talks letting us know we can do it too. And I love her.
Bill
Tuesday, March 3, 2009
Advice vs experience
So very many people have stepped up wanting to be helpful and have given to Jacki, Kate and my family in so many different ways. From pulling weeds and lifting a new 5 gal water bottle onto the dispenser; from brownies to vegetable soup and lasagna. The prayers are helping IGT. You sharing our sad and scared as well as gratitude and joy brings a closeness and connectedness we humans seek all our lives. Thank you - I know together we are "Whuppin' Cancer".
I wrote a month or so in this blog about how most people say "how can I help" with genuine sincerity, but then don't know what to say nor what to do. Joseph, my old friend of 30 yrs(though we never got close again after I got clean) had esophageal cancer a year and a half ago. He died 7 months later. I saw him once and did not know what to say or do. I later called twice, and he did not call back - just the excuse I needed to let myself off the hook. I did not even try again. I understand if you are experiencing similar difficulty, AND I know I still feel remorse that I did not do better.
So, perhaps you and I share a dilemma: you do not know what to do or say, and I have not been able to tell you what would help other than "pray". The God of my attempt to understand wants action and you and I need action. So, here is what I now wish I had done with my friend Joe:
Ask what I can do, but expect no answer. Call but expect no return call. E'mail expecting no reply. If I expect those responses, it is not love but rather barter. Avoid giving advice, but share my own relevant experience or any relevant experience with someone close to me. I had no such experience for Joseph. Maybe most helpful, listen if when he wanted to talk.
I can tell you that you asking, calling, emailing, hugging and listening has helped so very much and made a big difference for me and my loved ones. Even reading and maybe commenting on these blogs has a positive impact. You have often brought me tears of overwhelming gratitude for the love we can muster amongst us.
Love, gratitude, smiles, laughter, joy - all trigger the miraculous human body to manufacture white blood cells. White blood cells are one of the best tools for "Whuppin' Cancer." Thanks for riding with me!
Bill
I wrote a month or so in this blog about how most people say "how can I help" with genuine sincerity, but then don't know what to say nor what to do. Joseph, my old friend of 30 yrs(though we never got close again after I got clean) had esophageal cancer a year and a half ago. He died 7 months later. I saw him once and did not know what to say or do. I later called twice, and he did not call back - just the excuse I needed to let myself off the hook. I did not even try again. I understand if you are experiencing similar difficulty, AND I know I still feel remorse that I did not do better.
So, perhaps you and I share a dilemma: you do not know what to do or say, and I have not been able to tell you what would help other than "pray". The God of my attempt to understand wants action and you and I need action. So, here is what I now wish I had done with my friend Joe:
Ask what I can do, but expect no answer. Call but expect no return call. E'mail expecting no reply. If I expect those responses, it is not love but rather barter. Avoid giving advice, but share my own relevant experience or any relevant experience with someone close to me. I had no such experience for Joseph. Maybe most helpful, listen if when he wanted to talk.
I can tell you that you asking, calling, emailing, hugging and listening has helped so very much and made a big difference for me and my loved ones. Even reading and maybe commenting on these blogs has a positive impact. You have often brought me tears of overwhelming gratitude for the love we can muster amongst us.
Love, gratitude, smiles, laughter, joy - all trigger the miraculous human body to manufacture white blood cells. White blood cells are one of the best tools for "Whuppin' Cancer." Thanks for riding with me!
Bill
Monday, March 2, 2009
Wee bit 'o hopeful news . . .
Went to new doc this morning, thinking it was a consult prior to starting chemo this week. Of course he wanted to review my file and radiology film from Mayo. Wow! He poured over it and quickly recognized the indicators of . . . not urothelial papillary whatchamacallit cancer, but rather the much more common kidney cancer. Full circle from early January, but more validated. I still have metasticized cancer, meaning it has grown into my lungs. It is still stage 4, but it is not rare, and there is a great deal of research, advancements and experience treating metasticized kidney cancer. Maybe even 10 to 20% CURE possibility. If practicing medicine suggests 10 to 20, then with all of you and much prayer and love, the odds are way up from a few days ago. I will take this bit of possible good news.
The caveat: while he strongly suggested several times that Mayo had blown the diagnosis, he also said it may be good to seek yet a 3rd opinion from a kidney cancer specialist who is really deep into my brand of cancer. Maybe someone at UofA Medical Center. If this guy and a 3rd are on same page, then remove kidney and chemo are probable next steps. Okay, it is a marathon and the next short little leg is meet with doc #3.
I told Kate, and bursting out of her mouth came, "Wow, what a ride!" She is thrilled and far more rational and mature about all this than a guy could hope his daughter could be. Have I said how proud I am for her? She is still whopped up side of the head too, but she inspires me.
Could I sell tickets to this roller coaster?
Bill
The caveat: while he strongly suggested several times that Mayo had blown the diagnosis, he also said it may be good to seek yet a 3rd opinion from a kidney cancer specialist who is really deep into my brand of cancer. Maybe someone at UofA Medical Center. If this guy and a 3rd are on same page, then remove kidney and chemo are probable next steps. Okay, it is a marathon and the next short little leg is meet with doc #3.
I told Kate, and bursting out of her mouth came, "Wow, what a ride!" She is thrilled and far more rational and mature about all this than a guy could hope his daughter could be. Have I said how proud I am for her? She is still whopped up side of the head too, but she inspires me.
Could I sell tickets to this roller coaster?
Bill
Sunday, March 1, 2009
Another Shoe?
Today has been a rough day in between my ears. I do not want to die, not like this and not for a long time. I find myself wondering, hoping and praying the new doc will have another shoe to drop, a good one that points to a variation in the diagnosis from Mayo. A diagnosis that I can live with. In between my ears today the voice that is not on my side says I am not doing enough, and if I were this would all go away.
I am pretty sure the roughness of this day comes from the new doc tomorrow who is to review my file and radiology films and then begin administering chemo this week. What I really want is for him and his colleagues to find a better diagnosis. I am asking for another opinion from this oncology practice near Desert Banner Hospital. Let go and let God, AND, I can ask.
That's all I can write today.
Bill
I am pretty sure the roughness of this day comes from the new doc tomorrow who is to review my file and radiology films and then begin administering chemo this week. What I really want is for him and his colleagues to find a better diagnosis. I am asking for another opinion from this oncology practice near Desert Banner Hospital. Let go and let God, AND, I can ask.
That's all I can write today.
Bill
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