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
Tuesday, November 3, 2009
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
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