2 yrs ago I learned I have cancer and saw the CT scan pic of a baseball sized tumor on my right kidney and one radiologist saw, "too many nodules to count" in my lungs. Turns out the nodules are kidney cancer cells spread into my lungs. I went Mayo Clinic, surprised for some reason that I got to go there. After much poking, prodding, scanning, etc, they gave me a very invasive biopsy, sticking fingers and equipment between my ribs. It still hurts where they took chunks out of my lung.
Bottom line, they made a diagnosis, told me I had 18mos to 2yrs, and referred me for a 2nd opinion. Turns out they were a little off on diagnosis: they urethelial but it turns out to be kidney. Either way, the cells are papillary cells which make my cancer unusual and as of 2yrs ago, incurable. mPRCC. Metastasized Papillary Renal Cell Carcinoma. Metastasized means spread into other areas of the body. A papillary cell has kinda like fingers, which grab into surrounding healthy tissue. Renal means kidney. Carcinoma is basically a lump of cancer cells.
Now I don't know about you, but until it hit me, I thought cancer was cancer. Now I know there are a couple hundred kinds of cancers. Some can be removed. Some respond well to chemo or radiation, and we have all heard of cancer just disappearing. I would never have guessed there are several types of Kidney cancer cells and several of lung and breast and bone and blood. I would never have guessed I would get a slow growing type of kidney cancer that at best can be slowed but not stopped with current drugs. Today when I see or hear about "find a cure for cancer" or especially when I hear, "give us money to find a cure for cancer" I wonder who it is that thinks they know what that means. I do have a cynical side.
So, here I am. One year passed, 18mos passed, and now 2 years. My cancer has grown slightly although the drug combo trial I am on showed tiny shrinkage 3 months ago. There may be tiny cancer spots on a couple of my bones. They may want to put me on an additional chemo drug for that. However, I most certainly am not dead. Not in a box. I have not passed (please do not ever use that term about me). I am still with us, involved, useful and grateful to still be kicking.
Only recently has it sunk into my head that this process could go on for years. One, two, five, ten? Current drugs still cannot cure it nor even stop it, but they sure seem to keep things slow growing. Maybe a cure will be developed within those possible years. I hope so. In the mean time, what is my life about? If I have only 6 or 7 hours per day, half a.m. and half pm, then what can I do with those hours. The hours are a little bit predictable and a little bit regular. Sometimes I am just out of it for a whole day or two.
Some who read this tend to think I need to be told that I need to eat right, or meditate more, or pray more, or think positive. Some have indirectly or directly implied that if I do things right then I can cure this cancer. Or, if I had lived right I would not even have cancer. What do they really mean by those words and implications? That it could never happen to you and if it did you could fix it? Come on, give all a break when we suffer a human malady. "I am here by God's grace and mercy, I ain't with no controversy."
Somehow that leads me back around to what is my life about? What can I do? Each hour of each day I can do the best I can. I can ask for help, from up on high or even at a homeless shelter. I can give whatever I can. I can seek patience, tolerance, wonder and awe at how joyous so much of my surroundings are. I can become more honest and gently direct in my communications. Do we really need elephants in the living room that no one talks about?
What can I do? I could just be stuck in fear and sad and anger. Or,I can continue being part of the medical community PRACTICING medicine. I can seek all the qualities and spiritual principles that add up to gratitude and love. I can enjoy efforts at being a kind, gentle and loving man living a wondrous life with wondrous relationships. I can relish the moments of humility being Bill Banana, one of the bunch.
Bill
Sunday, December 26, 2010
Wednesday, December 15, 2010
Try to Write
3 people worked me over at dinner last evening about not blogging much. I said I just have not had much to say and did not know how to start when I do want to say something. Jacki said, and she is right as usual, to just sit down and put my fingers on the keyboard and see what happens. So . . .
I know that part of what holds me back is knowing that to really put myself into this blog, I must tell the full story. Yes, I have cancer, it is currently uncurable and side effects of the chemo/poisons I take to slow the growth are often near intolerable. I started the everyday little white pill in April 2009 and the life commanding side effects have ruled much of my time and efforts since. In July this year my case became part of a drug study combining the Tarceva pill with Avastin which goes in my arm every other week. The two drugs together have given a tiny bit of shrinkage and added hope. Diagnosis and medical intervention.
The Avastin immediately gave me high blood pressure and so I take two more drugs to manage my BP.
The rest of the story includes serious chronic clinical depression. Looking back there are some signs of this even back into adolescence. The social security reports we all get every year shows dramatic swings in my income just as one fiscal indicator. The dollars vary from well over $100k a few years to $0.00 in a few other years. Five marriages might suggest some undiscovered malfunction. Only in 2002 did I begin to end my denial of my own depression. I remember before even ridiculing people who claimed clinical depression. One of those people committed suicide soon after my ridicule. I know I did not cause it, but I sure did not help.
My depression was never the frequent suicidal thoughts - never gave that more than a passing thought, but was aware that I could go there. My depression instead is felt much more physical, a "slogging through mud" feeling that just would not lift. I missed many days of work and backed out of invites and commitments frequently. It is very hard to explain and still is shrouded with shame, but there came a time when I just knew something was broken and beyond denial. Someone gave me a helpful analogy: when an arm is broken we put it in a cast allowing it to heal. When an organ is malfunctioning, we treat it with medicine and diet, exercise, etc. Well, guess what, the brain is an organ and medicine, diet, exercise and relationships can be the healing cast.
Through trial and error, my specialist and I found the drug that best manages my depression - maybe slogging in water now but not mud. She says I am a light weight, impacted by very small changes in dosage. Diagnosis and medical intervention.
Now, a big part of why I have had difficult time blogging and getting real: way before diagnosis of depression and even longer before cancer, I was a drug abuser - an addict. Writing this breaks my anonymity and I am not sure all who read this are my friends.
In early January I will have been clean for 17 years. I used "moderately" for 21 years. Can lying everyday to cover my everyday use be called "moderate"? And then I found a go-fast drug that took me down fast and hard in just 4 more years. I am talking acre horse property in north Scottsdale, pool, big house, pretty cars, all the way down to homeless, doing anything for a hit and disconnected from all who love me. The journey back from there, via a wonderful 12 step program, and building a relationship with God as I understand God, has led to an awesome 17 years of recovery and gratitude that even cancer has not taken away.
If life was fair, due to addiction, I would have been dead 17 years ago. Instead my life has become renewed, relationships repaired. I am a great Dad and I have even learned to be a good husband madly in love with my wife. I have learned it is better to be kind than to be right.
This part of my story, the recovery of my life, is the part that makes me cry. Gratitude tears. Gratitude for the grace that has given me 17 years of life beyond my expectations. This is the part of my story that depression has not been able to spoil. It is the part that cancer wants to take away giving me great sadness for what it seems I must lose - great sadness for the loss those in my life will feel. I can only imagine the grieving my wife will experience because I am so loved by her. My daughter - I know what it is like to lose my father when he was just 61.
There is sadness and fear, but even bigger is my hope for medical advancement. Bigger is my faith that all your prayers are effective. I know that God's will is being done as I write. Biggest of all, is my gratitude for what I have been given and for my desire to keep giving it away. Maybe writing this blog helps me do just that.
Bill
I know that part of what holds me back is knowing that to really put myself into this blog, I must tell the full story. Yes, I have cancer, it is currently uncurable and side effects of the chemo/poisons I take to slow the growth are often near intolerable. I started the everyday little white pill in April 2009 and the life commanding side effects have ruled much of my time and efforts since. In July this year my case became part of a drug study combining the Tarceva pill with Avastin which goes in my arm every other week. The two drugs together have given a tiny bit of shrinkage and added hope. Diagnosis and medical intervention.
The Avastin immediately gave me high blood pressure and so I take two more drugs to manage my BP.
The rest of the story includes serious chronic clinical depression. Looking back there are some signs of this even back into adolescence. The social security reports we all get every year shows dramatic swings in my income just as one fiscal indicator. The dollars vary from well over $100k a few years to $0.00 in a few other years. Five marriages might suggest some undiscovered malfunction. Only in 2002 did I begin to end my denial of my own depression. I remember before even ridiculing people who claimed clinical depression. One of those people committed suicide soon after my ridicule. I know I did not cause it, but I sure did not help.
My depression was never the frequent suicidal thoughts - never gave that more than a passing thought, but was aware that I could go there. My depression instead is felt much more physical, a "slogging through mud" feeling that just would not lift. I missed many days of work and backed out of invites and commitments frequently. It is very hard to explain and still is shrouded with shame, but there came a time when I just knew something was broken and beyond denial. Someone gave me a helpful analogy: when an arm is broken we put it in a cast allowing it to heal. When an organ is malfunctioning, we treat it with medicine and diet, exercise, etc. Well, guess what, the brain is an organ and medicine, diet, exercise and relationships can be the healing cast.
Through trial and error, my specialist and I found the drug that best manages my depression - maybe slogging in water now but not mud. She says I am a light weight, impacted by very small changes in dosage. Diagnosis and medical intervention.
Now, a big part of why I have had difficult time blogging and getting real: way before diagnosis of depression and even longer before cancer, I was a drug abuser - an addict. Writing this breaks my anonymity and I am not sure all who read this are my friends.
In early January I will have been clean for 17 years. I used "moderately" for 21 years. Can lying everyday to cover my everyday use be called "moderate"? And then I found a go-fast drug that took me down fast and hard in just 4 more years. I am talking acre horse property in north Scottsdale, pool, big house, pretty cars, all the way down to homeless, doing anything for a hit and disconnected from all who love me. The journey back from there, via a wonderful 12 step program, and building a relationship with God as I understand God, has led to an awesome 17 years of recovery and gratitude that even cancer has not taken away.
If life was fair, due to addiction, I would have been dead 17 years ago. Instead my life has become renewed, relationships repaired. I am a great Dad and I have even learned to be a good husband madly in love with my wife. I have learned it is better to be kind than to be right.
This part of my story, the recovery of my life, is the part that makes me cry. Gratitude tears. Gratitude for the grace that has given me 17 years of life beyond my expectations. This is the part of my story that depression has not been able to spoil. It is the part that cancer wants to take away giving me great sadness for what it seems I must lose - great sadness for the loss those in my life will feel. I can only imagine the grieving my wife will experience because I am so loved by her. My daughter - I know what it is like to lose my father when he was just 61.
There is sadness and fear, but even bigger is my hope for medical advancement. Bigger is my faith that all your prayers are effective. I know that God's will is being done as I write. Biggest of all, is my gratitude for what I have been given and for my desire to keep giving it away. Maybe writing this blog helps me do just that.
Bill
Saturday, November 27, 2010
Results?
From in the air somewhere over probably Colorado. I had the Avastin infusion yesterday, and turkey dinner today at Jacki’s sponsee sister’s home.thefirst was (and remains a bear) and the 2nd was a delight. My appetite is less these days. I have lost 16 pounds sonce 4/09, mostly muscle mass. I wear suspenders now because cinching my belt was no longer enough to hold up my pants – the no-belt prison look with my back pockets at my knees.
I had plans last night to do a meeting and a recovery Thanksgiving pot-luck. After the seeming ordeal yesterday,I was way too sapped of energy to go anywhere nor do anything. Pretty much zoned mindlessly watching TV. Jacki says I am depressed for a few days after each bi-weekly infusion. For sure this time she is right. I feel so down. Part of it is worn out, part is the drug(s). I am sure in a couple days I will feel better.
Meanwhile, feeling this way is just part of the journey. Some days it just gets to me more than others. This trip is one of the now bi-monthly trips I make for restaging visits. Restagiing means tests and samples and scans, CTs, MRIs and PET. The PET is rough because I must not eat nor drink anything for 6 hours before. The Pet this time was scheduled for Tuesday so I ate naught prior to noon. And then 1pm. And then 2pm when they decided the machine was disabled until tomorrow. So on Wed I got to eat nothing again until about 4.
Now it is Saturday, 3 days after the infusion. Feel better except I have a cold. Nose running faster than I can keep up. Drip.
In my head it is busy with what ifs. The results of the scans were, "No change, no growth, no shrinkage." "However, we do see a small spot on your hip of something with activity going on around it. Probably is nothing, but it may be a good idea to start an additional medication just in case." "Probably is nothing". You can guess where my head went, and the thought of yet another medication dripped into my arm for an hour once a week - well let's just say fear, anger and resentment poured into my thinking. Let's just wait 'til the next restaging in January and see what those scans and tests say.
It is still Saturday and I am in the grip of infusion effects, fear of the spot, fatigue from the whole process - I am tired of this! And in the grip of my first cold in a couple years. This to shall pass?
Bill
I had plans last night to do a meeting and a recovery Thanksgiving pot-luck. After the seeming ordeal yesterday,I was way too sapped of energy to go anywhere nor do anything. Pretty much zoned mindlessly watching TV. Jacki says I am depressed for a few days after each bi-weekly infusion. For sure this time she is right. I feel so down. Part of it is worn out, part is the drug(s). I am sure in a couple days I will feel better.
Meanwhile, feeling this way is just part of the journey. Some days it just gets to me more than others. This trip is one of the now bi-monthly trips I make for restaging visits. Restagiing means tests and samples and scans, CTs, MRIs and PET. The PET is rough because I must not eat nor drink anything for 6 hours before. The Pet this time was scheduled for Tuesday so I ate naught prior to noon. And then 1pm. And then 2pm when they decided the machine was disabled until tomorrow. So on Wed I got to eat nothing again until about 4.
Now it is Saturday, 3 days after the infusion. Feel better except I have a cold. Nose running faster than I can keep up. Drip.
In my head it is busy with what ifs. The results of the scans were, "No change, no growth, no shrinkage." "However, we do see a small spot on your hip of something with activity going on around it. Probably is nothing, but it may be a good idea to start an additional medication just in case." "Probably is nothing". You can guess where my head went, and the thought of yet another medication dripped into my arm for an hour once a week - well let's just say fear, anger and resentment poured into my thinking. Let's just wait 'til the next restaging in January and see what those scans and tests say.
It is still Saturday and I am in the grip of infusion effects, fear of the spot, fatigue from the whole process - I am tired of this! And in the grip of my first cold in a couple years. This to shall pass?
Bill
Saturday, November 20, 2010
Rock and spin or roll and flow
Recently I have done a guided imagery meditation that I learned 35 yrs ago. It always led me to lying on a small sand bar between 2 boulders and more high boulders across the stream. I was sheltered, safe and lying in the sun. The stream carried me to that place, just as in the hundreds of times over the years of doing that same meditation. Using my God given built in meditation tools, breathing and imagination, I have reached that peaceful and safe place many times. Less frequently the past few years, caught up in life on life's terms. Distractions away from the gift and practice of something so good and replenishing - I had forgotten.
Recently though, almost by accident, I slipped into the little boat and rode the stream that has always taken me to the sand bar. This time, lying basking in the sun, I had the thought of getting back in the boat to see where the stream goes. Around the bend a beautiful garden-like vista of green and light and gently flowing water leading to what appears to be a small pond but impassable due to a damn of sticks and branches, logs and brush. In that moment I just plain knew that dam is my cancer. It has been a beautiful ride, but no way past this damn dam.
And then, I see this is a beaver dam with busy little beavers slapping the water with their tails and fortifying the damn. In despair a deep moaning howl escapes my throat, attracting the attention of the much larger and wiser old Mother beaver. She takes my hand and pulls me under, guiding me under water to the beavers den - a small dome-like shelter still under the dam but with space to breath and rest above the water. She showed me that I could just ride the boat to this point only to sit dammed in by my cancer. A beautiful journey ending here. I can relive the journey over and over, but still end up here. I can be grateful for the boat and the stream, the sun and the sand bar, the cavern with the floor of river rock crunching as I walk to the stream and find the boat. I can enjoy the mystery of the entrance from the back of my closet to the winding stone stairwell leading to the cavern of many colors.
Indeed I can feel gratitude for every single heartbeat of living that eventually has led me to the sandbar and now to the beaver dam. I can stop here and maybe help move some twigs and branches, even logs. Maybe the dam can be broken. But then the Mother beaver takes my hand again, pulling my from the den, under water and up to the surface where the water flows, as with all dams, over the lip of the damn dam. I can catch glimpses of what lies downstream but I cannot flow nor climb over this obstruction. The wise old Mother beaver tells me there is no way around but through. What?
This still, after several more imagery journeys, leaves me perplexed. "What the heck is she talking about." I do know the glimpses are hope and with that hope I can still find enough faith to keep paddling, swimming, hold my breath and trusting wise old beavers and doctors and above all else, trust the God of my own understanding. I have been helped along this far and I'll not be dropped now.
Jacki and I leave in the morning for Bethesda and another round of poke, prod and probe, scanning for changes in my tumors. Last time there was a tiny bit of shrinkage. Thank you for your prayers.
Bill
Recently though, almost by accident, I slipped into the little boat and rode the stream that has always taken me to the sand bar. This time, lying basking in the sun, I had the thought of getting back in the boat to see where the stream goes. Around the bend a beautiful garden-like vista of green and light and gently flowing water leading to what appears to be a small pond but impassable due to a damn of sticks and branches, logs and brush. In that moment I just plain knew that dam is my cancer. It has been a beautiful ride, but no way past this damn dam.
And then, I see this is a beaver dam with busy little beavers slapping the water with their tails and fortifying the damn. In despair a deep moaning howl escapes my throat, attracting the attention of the much larger and wiser old Mother beaver. She takes my hand and pulls me under, guiding me under water to the beavers den - a small dome-like shelter still under the dam but with space to breath and rest above the water. She showed me that I could just ride the boat to this point only to sit dammed in by my cancer. A beautiful journey ending here. I can relive the journey over and over, but still end up here. I can be grateful for the boat and the stream, the sun and the sand bar, the cavern with the floor of river rock crunching as I walk to the stream and find the boat. I can enjoy the mystery of the entrance from the back of my closet to the winding stone stairwell leading to the cavern of many colors.
Indeed I can feel gratitude for every single heartbeat of living that eventually has led me to the sandbar and now to the beaver dam. I can stop here and maybe help move some twigs and branches, even logs. Maybe the dam can be broken. But then the Mother beaver takes my hand again, pulling my from the den, under water and up to the surface where the water flows, as with all dams, over the lip of the damn dam. I can catch glimpses of what lies downstream but I cannot flow nor climb over this obstruction. The wise old Mother beaver tells me there is no way around but through. What?
This still, after several more imagery journeys, leaves me perplexed. "What the heck is she talking about." I do know the glimpses are hope and with that hope I can still find enough faith to keep paddling, swimming, hold my breath and trusting wise old beavers and doctors and above all else, trust the God of my own understanding. I have been helped along this far and I'll not be dropped now.
Jacki and I leave in the morning for Bethesda and another round of poke, prod and probe, scanning for changes in my tumors. Last time there was a tiny bit of shrinkage. Thank you for your prayers.
Bill
Thursday, November 11, 2010
Comparing a few notes
Again, writing my blog and writing to others effected by the same cancer type, seem to feel the same to me, so I put this one in the blog.
Say Hey Matt, I did not even see that I had a reply from you until just now. I had another infusion of Avastin today. I think this is the 7th. I recall the first almost giving me a lift for a couple hours after, but now it just kicks my butt for 2 - 4 days. Since the previous infusion I have been fatigued all but 5 or 6 hours each day and even then I get uncontrollably drowsy and have to, HAVE to, get horizontal for a while.
I cannot imagine what this must be like for your daughters. My 27 yr old daughter has been a trooper and very helpful and supportive, but I also think she blocks it out most of the time. That's the thing about this type of cancer, it just drags on and on. I still feel no direct effect of the cancer itself, well maybe some breathing difficulty, so I sometimes wonder, "Will my life be like this for 5 or 10 years, or will the cancer suddenly take me south in a few months?" I imagine for our daughters it must be like having to watch wheat grow on an active California fault line waiting for the earthquake.
I have been told the Avastin costs about $5000 per two week dose, and the Tarceva is about $100 a day. I cannot imagine how anyone outside some research project could be on these drugs which seem to be the only thing that works on our type of cancer. To be having to fight with insurance companies on top of cancer's emotional drain - I can only sense a dread.
So the medication adds up to about $13,000 per month. My brain comes up with things like, should we in America spend that much to prolong a life? And of course, that thought is supported by, "Am I worth it?" Thank God I do not have to answer those questions now. I am extremely grateful for me personally being blessed with my treatment, and I feel so very sorry for so many in the USA who are not allowed this or other treatments because of money. I think I will stop here before getting on my healthcare soap box.
Bill
Say Hey Matt, I did not even see that I had a reply from you until just now. I had another infusion of Avastin today. I think this is the 7th. I recall the first almost giving me a lift for a couple hours after, but now it just kicks my butt for 2 - 4 days. Since the previous infusion I have been fatigued all but 5 or 6 hours each day and even then I get uncontrollably drowsy and have to, HAVE to, get horizontal for a while.
I cannot imagine what this must be like for your daughters. My 27 yr old daughter has been a trooper and very helpful and supportive, but I also think she blocks it out most of the time. That's the thing about this type of cancer, it just drags on and on. I still feel no direct effect of the cancer itself, well maybe some breathing difficulty, so I sometimes wonder, "Will my life be like this for 5 or 10 years, or will the cancer suddenly take me south in a few months?" I imagine for our daughters it must be like having to watch wheat grow on an active California fault line waiting for the earthquake.
I have been told the Avastin costs about $5000 per two week dose, and the Tarceva is about $100 a day. I cannot imagine how anyone outside some research project could be on these drugs which seem to be the only thing that works on our type of cancer. To be having to fight with insurance companies on top of cancer's emotional drain - I can only sense a dread.
So the medication adds up to about $13,000 per month. My brain comes up with things like, should we in America spend that much to prolong a life? And of course, that thought is supported by, "Am I worth it?" Thank God I do not have to answer those questions now. I am extremely grateful for me personally being blessed with my treatment, and I feel so very sorry for so many in the USA who are not allowed this or other treatments because of money. I think I will stop here before getting on my healthcare soap box.
Bill
Sunday, November 7, 2010
Not the only one
I am not the only mPRCC case. It is quite unusual, but I do communicate a little with others in the same boat. Often they seem focused on technical terms and acronyms while searching for THE answer. We all have different ways of dealing with the immediate and continuous losses as cancer steals the lives we used to have. My own narrow viewing often fails to notice the new and different life evolving around me. The possibility of dying and suffering is always over my shoulder, but this is just not all bad. The profound gratitude for my life to date balances the grief and heartache.
Within the diagnosis of PRCC are several variants. Mine is not hereditary. I get other terms for other colors of this deadly, to date incurable, PRCC. Mine I like to think of as a quirky curveball kind of PRCC. I have seen the term sporadic in a few references, but the narrow field of study is still missing exact parameters. I received a letter that asked if my type is sporadic and here is my hopefully compassionate response:
There seems to be nothing sporadic about my mPRCC, but then I really do not know what sporadic means in this context. I have chosen to focus more on relationships with wife, daughter, family and good friends. I remain amazed at the depth and quality I get to experience with those closest to me. It seems each morning I awake with a small box of energy and so I am very selective in allocating and I consciously choose giving and receiving in those relationships.
My search for treatment began with Mayo Clinic right here in my own backyard. They misdiagnosed and said I probably had 18mos - 2yrs. 2nd opinion was with a supposed expert PRCC pathologist at UofAz Med Center. I went on Tarceva April 2009 and saw what I guess is very slow (but steady) growth. The 9cm tumor on my kidney was a coin flip about cutting out. Still have it.
Soon after I began my own research to find work being done on this exact type of cell. XL880 seemed effective for hereditary but not my type and I was too late anyway. As I continued my search for expertise, all roads eventually led to NIH and here I am, 22 months since that first revealing scan. I believe that NIH has more experience on exactly mPRCC than any where else in the world. The fact that insurance companies are not manipulating treatment at NIH/NCI gives even more credibility. Consciously I decided to trust them on technical issues and focus more on my own areas of expertise - living and enjoying every little bit of life I can notice.
Maybe the hardest part of the whole experience has been watching my caregiver, my wife, go through just as much pain and loss and fear and personal horror. I have watched her age 5 or 6 years in the past two. I know she tries to protect me from how hard she is hit and I try to protect her from how hard I am hit. We always end up in each others arms getting real and crying for a few minutes and then we are good for 2 or 3 weeks.
Writing this blog has always been cathartic, and so is writing back to people in the same boat. Emailing or blogging about what this is like for me are similar efforts to me, so todays blog has some of both. It helps me and hopefully others as well. Beyond that I can send some prayers your way.
Bill
Within the diagnosis of PRCC are several variants. Mine is not hereditary. I get other terms for other colors of this deadly, to date incurable, PRCC. Mine I like to think of as a quirky curveball kind of PRCC. I have seen the term sporadic in a few references, but the narrow field of study is still missing exact parameters. I received a letter that asked if my type is sporadic and here is my hopefully compassionate response:
There seems to be nothing sporadic about my mPRCC, but then I really do not know what sporadic means in this context. I have chosen to focus more on relationships with wife, daughter, family and good friends. I remain amazed at the depth and quality I get to experience with those closest to me. It seems each morning I awake with a small box of energy and so I am very selective in allocating and I consciously choose giving and receiving in those relationships.
My search for treatment began with Mayo Clinic right here in my own backyard. They misdiagnosed and said I probably had 18mos - 2yrs. 2nd opinion was with a supposed expert PRCC pathologist at UofAz Med Center. I went on Tarceva April 2009 and saw what I guess is very slow (but steady) growth. The 9cm tumor on my kidney was a coin flip about cutting out. Still have it.
Soon after I began my own research to find work being done on this exact type of cell. XL880 seemed effective for hereditary but not my type and I was too late anyway. As I continued my search for expertise, all roads eventually led to NIH and here I am, 22 months since that first revealing scan. I believe that NIH has more experience on exactly mPRCC than any where else in the world. The fact that insurance companies are not manipulating treatment at NIH/NCI gives even more credibility. Consciously I decided to trust them on technical issues and focus more on my own areas of expertise - living and enjoying every little bit of life I can notice.
Maybe the hardest part of the whole experience has been watching my caregiver, my wife, go through just as much pain and loss and fear and personal horror. I have watched her age 5 or 6 years in the past two. I know she tries to protect me from how hard she is hit and I try to protect her from how hard I am hit. We always end up in each others arms getting real and crying for a few minutes and then we are good for 2 or 3 weeks.
Writing this blog has always been cathartic, and so is writing back to people in the same boat. Emailing or blogging about what this is like for me are similar efforts to me, so todays blog has some of both. It helps me and hopefully others as well. Beyond that I can send some prayers your way.
Bill
Friday, November 5, 2010
5
Measuring change, growth or shrinkage in the tumor on my kidney is very difficult - nigh on impossible. It is shaped too irregular. I said early on that it is about the size of a baseball.That is about right, except from another angle it looks more like a bean - it is an irregularly shaped mass attached to my right kidney. I once saw a picture of a papillary renal cell carcinoma (my type) and it looked a little like a geode broken open and showing ugly crystals within. I have learned that most of this mass is comprised of dead cells - I believe the term is necrotic.
So, how do the docs at NIH/NCI measure changes? They picked 5 of the largest nodules in my lungs. Remember way back in January 2009 the first radiologist reported too many nodules to count? They are smaller than the kidney tumor and easier to measure change. Those 5 nodules of metastatic kidney cancer are my baseline tumors measuring change in size. At the end of my second cycle those 5 tumors showed a 1 to 3MM shrinkage. Not very much, but the first time in 22 months I heard the word shrinkage
That was wonderful news, giving us hope and determination to withstand the side affects of my combination of very powerful drugs. I was discouraged and for the first week since diagnosis considered (privately) stopping the treatment. The word shrinkage ended any real thought of stopping.
Even better! I communicate some with a very few patients with same type of cells. She started the same protocol a month before me. Her recent measurements show some shrinkage and "disappearance" of a few of the smaller metastatic nodules. Dude!~ Now I am almost eager (one foot on ground Bill) for my next bi-monthly end of cycle scans. Thanksgiving week. Good timing, eh?
Bill
So, how do the docs at NIH/NCI measure changes? They picked 5 of the largest nodules in my lungs. Remember way back in January 2009 the first radiologist reported too many nodules to count? They are smaller than the kidney tumor and easier to measure change. Those 5 nodules of metastatic kidney cancer are my baseline tumors measuring change in size. At the end of my second cycle those 5 tumors showed a 1 to 3MM shrinkage. Not very much, but the first time in 22 months I heard the word shrinkage
That was wonderful news, giving us hope and determination to withstand the side affects of my combination of very powerful drugs. I was discouraged and for the first week since diagnosis considered (privately) stopping the treatment. The word shrinkage ended any real thought of stopping.
Even better! I communicate some with a very few patients with same type of cells. She started the same protocol a month before me. Her recent measurements show some shrinkage and "disappearance" of a few of the smaller metastatic nodules. Dude!~ Now I am almost eager (one foot on ground Bill) for my next bi-monthly end of cycle scans. Thanksgiving week. Good timing, eh?
Bill
Tuesday, October 5, 2010
Wee bit o' shrinkage
Yes!!! Good news! After 20 months of scans showing tiny growth every time, The doc said "significant shrinkage". Let's say 3 MM shrinkage or 0.11811 inches in two months since starting the drug protocol at NIH. Not that I would ever project, but at that rate, in another 20 months the lung tumors would be gone. Ohh, to be able to say, "Making a comeback!"
Day to day reality is still here. The second medicine, infused (dripped) into my arm, has magnified the previous symptoms and thrown in a couple new ones. I am tired and wobbly, short attention span, sketchy thinking, cannot drive. You don't want me on the road about 8 of my awake hours each day. Now I get sporadic high BP, bloody nose, mild 2 step in and out of the Loo. I want rolls of Charmin for Christmas.
But, ya know what? We have SHRINKAGE!
Today is Tuesday. I went to a meeting last evening for the first time since . . . two weeks ago. I have isolated and felt depressed much of the time. My face has been so broken out with the acne-like rash that I was afraid to be seen. My sponsor would call that "overly concerned with looking good." Oh well.
I have not blogged in two weeks. Plenty to say, but I did not to want to write one like the last. I do not even want some of the thoughts from the last blog. Quitting the treatment and thereby getting rid of most of the side effects, thereby getting some of my old life back - you bet I think and fantasize of quitting and going back to the bliss of not knowing. Maybe I will do that one day. But not now. I think with your help and prayers that I can make it another twenty months. It's not just me, I know it's We.
Bill
Day to day reality is still here. The second medicine, infused (dripped) into my arm, has magnified the previous symptoms and thrown in a couple new ones. I am tired and wobbly, short attention span, sketchy thinking, cannot drive. You don't want me on the road about 8 of my awake hours each day. Now I get sporadic high BP, bloody nose, mild 2 step in and out of the Loo. I want rolls of Charmin for Christmas.
But, ya know what? We have SHRINKAGE!
Today is Tuesday. I went to a meeting last evening for the first time since . . . two weeks ago. I have isolated and felt depressed much of the time. My face has been so broken out with the acne-like rash that I was afraid to be seen. My sponsor would call that "overly concerned with looking good." Oh well.
I have not blogged in two weeks. Plenty to say, but I did not to want to write one like the last. I do not even want some of the thoughts from the last blog. Quitting the treatment and thereby getting rid of most of the side effects, thereby getting some of my old life back - you bet I think and fantasize of quitting and going back to the bliss of not knowing. Maybe I will do that one day. But not now. I think with your help and prayers that I can make it another twenty months. It's not just me, I know it's We.
Bill
Saturday, September 18, 2010
Chin up?
Sometimes it just won't lift up. Sometimes this cancer stuff grabs me by the cajones and drags me through all the emotions and thoughts that I do not want to feel nor acknowledge. I do not know if cancer is winning some kind of battle here or if the solution is taking so much away that I question the balance of value. The medication I take to find a solution for my peculiar type of cancer cell is removing me. Me. My self perception, my life activities, my physical abilities to do things as simple as walk.
My ability to interact with my loved ones and others so close to me is now so passive. I sit and hope someone will feel comfortable enough to come over and hug what to me feels like bones with a belly. Some who have not seen me is a while show a flicker of shock or maybe a flicker of sadness. Lately my stamina is good for maybe an hour or two before I have to - HAVE TO - get horizontal and just chill. Sometimes I just do not want to be seen like this.
Before I was diagnosed, back when I knew nothing of this thing growing inside, I was riding my bike avidly and in the best physical shape in a dozen years, maybe more. Jacki and I were social, I mean we had more people in our home for cookouts or whatever than our small place can hold. Often I was the lead cook although I needed help to flip omelets. My recovery was in full swing, not over doing it, but actively involved in service and sponsoring. My relationship with my wife was of the quality, fullness, love and closeness lifelong sought.
Loss. Grief. I miss my life as it was. Has cancer taken this away or is it the treatment? The tumors have grown slowly for near two years since detected. Were they not growing slowly before discovered? Have they grown more slowly with the thief we call treatment? Where would my life be if I were still in the dark about my cancer? What would my life be like if I had said no to the treatments? If I stopped treatment what pieces would I get back in quality of life?
Jacki reminds me that the small windows of activity are smaller for a few days after each infusion of the additional drug and the consequent blood pressure drugs. Even if she is not just making stuff up in trying to make me feel better, the damn windows are too small right now!!! I want some respite from the feeling of helplessness that has come the last few days. The "medicine" is ruling my life. Today it is even chairing the meeting of the characters in my head.
Some days or parts of days, my chin is not up. Faking it too often is stuffing that which gets pissed off when left in the dark. Some days are just like this. Fulling feeling the price I and my loved ones pay for treating what is horrible enough on its own. I am not backing out of the drug trial. I am not giving the cancer a straight shot to killing me. I can deal with the symptoms with the help of my God and those who love me and those who at best can only react with a flicker when they see me after a period of time. Even they help with their human emotion and bits of prayer.
At this moment I can find gratitude. but I do not want to write about that right now.
Next week Jacki and I go back to Bethesda and the National Cancer institute for a few days of tests, scans and measurements. The purpose of that trip is looking for the impact so far of two very powerful drugs on my metPRCC and then another infusion. Thanks for going along for the ride.
This one gets published raw, without review.
Bill
My ability to interact with my loved ones and others so close to me is now so passive. I sit and hope someone will feel comfortable enough to come over and hug what to me feels like bones with a belly. Some who have not seen me is a while show a flicker of shock or maybe a flicker of sadness. Lately my stamina is good for maybe an hour or two before I have to - HAVE TO - get horizontal and just chill. Sometimes I just do not want to be seen like this.
Before I was diagnosed, back when I knew nothing of this thing growing inside, I was riding my bike avidly and in the best physical shape in a dozen years, maybe more. Jacki and I were social, I mean we had more people in our home for cookouts or whatever than our small place can hold. Often I was the lead cook although I needed help to flip omelets. My recovery was in full swing, not over doing it, but actively involved in service and sponsoring. My relationship with my wife was of the quality, fullness, love and closeness lifelong sought.
Loss. Grief. I miss my life as it was. Has cancer taken this away or is it the treatment? The tumors have grown slowly for near two years since detected. Were they not growing slowly before discovered? Have they grown more slowly with the thief we call treatment? Where would my life be if I were still in the dark about my cancer? What would my life be like if I had said no to the treatments? If I stopped treatment what pieces would I get back in quality of life?
Jacki reminds me that the small windows of activity are smaller for a few days after each infusion of the additional drug and the consequent blood pressure drugs. Even if she is not just making stuff up in trying to make me feel better, the damn windows are too small right now!!! I want some respite from the feeling of helplessness that has come the last few days. The "medicine" is ruling my life. Today it is even chairing the meeting of the characters in my head.
Some days or parts of days, my chin is not up. Faking it too often is stuffing that which gets pissed off when left in the dark. Some days are just like this. Fulling feeling the price I and my loved ones pay for treating what is horrible enough on its own. I am not backing out of the drug trial. I am not giving the cancer a straight shot to killing me. I can deal with the symptoms with the help of my God and those who love me and those who at best can only react with a flicker when they see me after a period of time. Even they help with their human emotion and bits of prayer.
At this moment I can find gratitude. but I do not want to write about that right now.
Next week Jacki and I go back to Bethesda and the National Cancer institute for a few days of tests, scans and measurements. The purpose of that trip is looking for the impact so far of two very powerful drugs on my metPRCC and then another infusion. Thanks for going along for the ride.
This one gets published raw, without review.
Bill
Wednesday, September 8, 2010
Gentler
Two questions I have learned to ask are, "How long have you been hard on yourself?" and following the answer, "How is that working?" Must I forever feel not enough and lacking what it takes to be okay? My yardstick used to be measurements of money, house, pool, car, horses and prestige. I could drive a beautiful car, see someone drive a better car and feel less than. I required perfecting of myself - perfection, number 1, best in class, etc. The truth is, I still would not recognize perfection if it walked right in front of me. By requiring perfection I never measure up, I am never enough. I must arrogantly disagree with my God who created as he saw fit. When I complain about me, I am complaining about God's handiwork; I am saying I know better than God.
So, most of my life I have been far too hard on myself and some rather bizarre behaviors resulted from feeling not enough. Today I can be gentler with myself and use a different yardstick, one using spiritual assets instead of things.
I responded to a friend today, and found what I was being gentle with myself while writing. Absent is my too often used negative self talk. I spoke not hard on myself but rather speaking good of myself. It is not bragging nor conceited but rather toward where God has pulled me.
Sometimes today I can be gentle with myself. Still what I wrote back to my friend Lee was difficult to write and required tears. Here it is:
Thank you Lee, for the kind words and encouragement. You had an impact on me as well! As you put it, “No bullshit!!” (;-)
The woman thing: my experience over the years has been to change enough on the insides (in my case by doing the full NA deal) to become the kind of guy, the woman I was lookin’ for, was lookin’ for.
Tithing: for me is “I can’t keep what I have unless I give it away.” I have given much money away. But it not just money. A book that many find helpful is the Bible. In that book it says over 1300 times to help those less fortunate. One thousand, three hundred times. There are many ways to give as you know, and my hunch is you are way too conservative in weighing how much you do give and how much you could give. Do I really have anything better to do than give?
Popular? I do know that I am part of a huge community many of whom will not leave me alone. Now that is a Cadillac problem to have and I am blessed in many ways, including my health. If life was fair, I would literally have died near 17 years ago. Instead I have been given many wonderful years of fullness in life. Joy and happiness, sadness and grief, success and failure – all required to get me where I am today. I have the closeness I always wanted in my marriage with Jacki. My daughter is a woman I admire, and she comes to me first with some of life’s curveballs. With my family, both blood and recovery, I am able to receive what they give and I am able to give without measuring or keeping score.
Where I am today, is a man who knows it is better to be kind than to be right. I still fall far short of being the man I wanted to be, but I am and always have been a man who God made and loves. What more could I ask?
Bill
So, most of my life I have been far too hard on myself and some rather bizarre behaviors resulted from feeling not enough. Today I can be gentler with myself and use a different yardstick, one using spiritual assets instead of things.
I responded to a friend today, and found what I was being gentle with myself while writing. Absent is my too often used negative self talk. I spoke not hard on myself but rather speaking good of myself. It is not bragging nor conceited but rather toward where God has pulled me.
Sometimes today I can be gentle with myself. Still what I wrote back to my friend Lee was difficult to write and required tears. Here it is:
Thank you Lee, for the kind words and encouragement. You had an impact on me as well! As you put it, “No bullshit!!” (;-)
The woman thing: my experience over the years has been to change enough on the insides (in my case by doing the full NA deal) to become the kind of guy, the woman I was lookin’ for, was lookin’ for.
Tithing: for me is “I can’t keep what I have unless I give it away.” I have given much money away. But it not just money. A book that many find helpful is the Bible. In that book it says over 1300 times to help those less fortunate. One thousand, three hundred times. There are many ways to give as you know, and my hunch is you are way too conservative in weighing how much you do give and how much you could give. Do I really have anything better to do than give?
Popular? I do know that I am part of a huge community many of whom will not leave me alone. Now that is a Cadillac problem to have and I am blessed in many ways, including my health. If life was fair, I would literally have died near 17 years ago. Instead I have been given many wonderful years of fullness in life. Joy and happiness, sadness and grief, success and failure – all required to get me where I am today. I have the closeness I always wanted in my marriage with Jacki. My daughter is a woman I admire, and she comes to me first with some of life’s curveballs. With my family, both blood and recovery, I am able to receive what they give and I am able to give without measuring or keeping score.
Where I am today, is a man who knows it is better to be kind than to be right. I still fall far short of being the man I wanted to be, but I am and always have been a man who God made and loves. What more could I ask?
Bill
Tuesday, September 7, 2010
Just an Update
I have not felt creative enough to write how I like to write this thing, so here is a basic update.
Last week I went to Maryland again for my 3rd infusion of the additional drug, Avastin. Kate went with and spoiled me with loving, attentive care. Never before have she and I had so much time together - we were apart maybe a total of 4 or 5 hours in 6 days. Still we get along and I feel closer and evermore admiration for this 26 year old woman who is my daughter.
On Thursday I got the infusion - liquid with Avastin in it, dripping into my arm through a needle. It took a half hour. Like the first infusion a month ago, I felt energized after and we did the tourist thing for several hours. Lincoln, Washington, Viet Nam, White House and Capitol. We stood at Lincoln Memorial on the same steps where Martin Luther King gave his "I Have a Dream" speech. Someone else arrogantly speechified on those same steps just a few days before, but even that could not spoil the reverence exuding from the memorial and those steps.
The next infusion is the 16th at my oncologist's here in Arizona. And then, two weeks later I go to Maryland for end of first course scans to measure impact of the two drugs combined. I will tell you this, meeting with 2 or three standing doctors in a small exam room with me sitting down - I felt like a specimen. Next time, we are meeting around a table, eye to eye. I am human and require that much dignity - the specimen bit just doesn't cut it.
Please pray for me, I am more tired, less stamina and . . . oh yeah, walking far across the Capitol mall in DC with the side effect of mild diarrhea is a dangerous challenge. TMI?
Bill
Last week I went to Maryland again for my 3rd infusion of the additional drug, Avastin. Kate went with and spoiled me with loving, attentive care. Never before have she and I had so much time together - we were apart maybe a total of 4 or 5 hours in 6 days. Still we get along and I feel closer and evermore admiration for this 26 year old woman who is my daughter.
On Thursday I got the infusion - liquid with Avastin in it, dripping into my arm through a needle. It took a half hour. Like the first infusion a month ago, I felt energized after and we did the tourist thing for several hours. Lincoln, Washington, Viet Nam, White House and Capitol. We stood at Lincoln Memorial on the same steps where Martin Luther King gave his "I Have a Dream" speech. Someone else arrogantly speechified on those same steps just a few days before, but even that could not spoil the reverence exuding from the memorial and those steps.
The next infusion is the 16th at my oncologist's here in Arizona. And then, two weeks later I go to Maryland for end of first course scans to measure impact of the two drugs combined. I will tell you this, meeting with 2 or three standing doctors in a small exam room with me sitting down - I felt like a specimen. Next time, we are meeting around a table, eye to eye. I am human and require that much dignity - the specimen bit just doesn't cut it.
Please pray for me, I am more tired, less stamina and . . . oh yeah, walking far across the Capitol mall in DC with the side effect of mild diarrhea is a dangerous challenge. TMI?
Bill
Sunday, August 29, 2010
Inspire
1. (9) inspire, animate, invigorate, enliven, exalt
(heighten or intensify; "These paintings exalt the imagination")
4. (1) cheer, root on, inspire, urge, urge on, exhort, pep up
(spur on or encourage especially by cheers and shouts; "The crowd cheered the demonstrating strikers")
Today I received a note of encouragement from a friend who had a large marble sized tumor at the base of her brain. The thought of cancer in my brain scares me; I think that must be the worst. She must have energy sapping radiation which thankfully I have not had to do. I have always been inspired watching her ski as I try to keep up and match the vibrant, vigorous and animated joy she can radiate. My hunch is that radiation kicks her tumor better than the medical version.
So today I have a little Reba in me to help lift me out of the daily physical funk that steals my afternoons.
The definitions of inspire above do not quite make clear the most powerful method of inspiration, that demonstrated by example. Today I am much more likely to notice the example of those around my life who are walking through physical, mental, emotional and/or spiritual challenges. Some walk with a grace I aspire to, and others crawl because they no longer can walk. Occasionally I get to share with those human examples a moment of intimate grace, breathing hope and gratitude for life to each other. When I am paying attention and step out of my self, I can notice those moments. Thank you Reba.
Tuesday my daughter Kate and I fly to Bethesda, MD for my blood work Wed and third infusion on Thursday. We are staying to Sunday for father-daughter tourist time in DC.
My obsessing brain wants to figure out all the logistics of timing my energy hours with getting around the subway and walking around the monuments, museums, etc. Go with the flow Bill. Kate on the other hand just wants time with Dad and I don't think she much cares what we do. Having gone a couple times for these infusions by myself, I can tell you that I have learned my lesson: do not go by myself. Thank you Kate.
The additional cancer drug and consequent blood pressure drugs have tried to kick my butt, and they have come close a couple times. That is when all of you kick in with your examples and cheers and prayers and encouragement. You inspire me!
Bill
(heighten or intensify; "These paintings exalt the imagination")
4. (1) cheer, root on, inspire, urge, urge on, exhort, pep up
(spur on or encourage especially by cheers and shouts; "The crowd cheered the demonstrating strikers")
Today I received a note of encouragement from a friend who had a large marble sized tumor at the base of her brain. The thought of cancer in my brain scares me; I think that must be the worst. She must have energy sapping radiation which thankfully I have not had to do. I have always been inspired watching her ski as I try to keep up and match the vibrant, vigorous and animated joy she can radiate. My hunch is that radiation kicks her tumor better than the medical version.
So today I have a little Reba in me to help lift me out of the daily physical funk that steals my afternoons.
The definitions of inspire above do not quite make clear the most powerful method of inspiration, that demonstrated by example. Today I am much more likely to notice the example of those around my life who are walking through physical, mental, emotional and/or spiritual challenges. Some walk with a grace I aspire to, and others crawl because they no longer can walk. Occasionally I get to share with those human examples a moment of intimate grace, breathing hope and gratitude for life to each other. When I am paying attention and step out of my self, I can notice those moments. Thank you Reba.
Tuesday my daughter Kate and I fly to Bethesda, MD for my blood work Wed and third infusion on Thursday. We are staying to Sunday for father-daughter tourist time in DC.
My obsessing brain wants to figure out all the logistics of timing my energy hours with getting around the subway and walking around the monuments, museums, etc. Go with the flow Bill. Kate on the other hand just wants time with Dad and I don't think she much cares what we do. Having gone a couple times for these infusions by myself, I can tell you that I have learned my lesson: do not go by myself. Thank you Kate.
The additional cancer drug and consequent blood pressure drugs have tried to kick my butt, and they have come close a couple times. That is when all of you kick in with your examples and cheers and prayers and encouragement. You inspire me!
Bill
Sunday, August 22, 2010
2nd infusion
The elation I felt for 24 hours after 1st infusion has definitely become an evolving routine of sleep, up and active 3 or 4 hours in the morning and 3 or 4 active hours in the evening. My 3 - 5 hour afternoon period of being down and "hinky" has now stretched to 5 - 7 hours. Adding a second drug to treat cancer and two drugs to treat the high blood pressure side effect has doscumbibulated my body. (I twisted that word around, but I LIKE IT!) I have read myself to sleep almost everyday since boyhood, but now the light goes off as I knee into bed. Readily fatigued now accompanies most of my day and driving is pretty much out.
Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.
I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.
So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.
The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.
I'm tired now so I'm gonna stop.
Bill
Hopefully this part of my picture is mostly my body adjusting to powerful drugs and it will get better. My attitude remains mostly of gratitude and hope.
I went back to Maryland for the second infusion - left on Tuesday and returned on Thursday. To me that was in and out: fly early Tue, arrive there 3ish, shuttle to NIH by 4pm and then to nearby hotel. On wed, I get blood drawn, pee in a cup, and early Thu with results I go in for consultation with research team followed by hour long infusion. The last shuttle to the airport was at 2:30 and I got there at 2:29.
So now, the travel people want me to do this in Wed and out Thu. It is nigh on impossible to catch flights that could allow that to happen. Maybe red-eye flights could give them a one night turn around, but even the two night wiped me out. Guess where these bright ideas begin: bean counters upstairs.
The third infusion in two more weeks will be there and then I will do one one with my oncologist here. My daughter Kate insists on going with me for number 3 so we bought her ticket with intention of staying a couple extra days to hang father-daughter as tourists in our nation's capitol. However, NIH pays for my trip only for days of service and staying longer does not fit regulations. Whatever, I, Bill G will figure out how to make this happen my way! Uh ohhhhhhhhh, troublesome words. Okay, I will ask for help from HP in navigating bureaucratic regs.
I'm tired now so I'm gonna stop.
Bill
Monday, August 16, 2010
Laughter
My mom beat non Hodgkins Lymphoma twice, once a couple years ago but first about 15 years ago. I remember her telling me about a couple non medical tools she used. Guided imagery: a white knight riding his big white horse through the cancer cells and killing them like moles with his shiny sword.
Laughter therapy: watching comedies, telling and hearing jokes and even fake laughing causes our bodies to release feel good healing chemicals. Which leads me to my experience with cancer and laughing and smiling. I have heard zero cancer humor. I have walked the halls of Mayo Clinic, my oncologists office and now at NIH where I return tomorrow.
The only joke I have heard is: "What do you call a waiting room full of people talking about their maladies?" . . . . "An organ recital!" A lot of folks don't even get it. Sometimes if I tell it I get a looks of disapproval. Disapproval not because I am humorous at the wrong time, but rather most anytime I am around cancer patients. A doctor in her closed little room with me commented how refreshing it was to hear a patient express a sense of humor.
At times I do deal with uncomfortable situation with humor - it can be a method of keeping others off guard and at a distance. But other times for me it is just a human way to find light in a very dark piece of life. Grieving needs a break and it turns out taking that break is healthy. Maybe I can mostly just let loose a contagious smile here and there. I need to laugh.
Since receiving the additional drug, Avastin (Bevacizumab Injection) 2 weeks ago I have felt several old symptoms with a new twist and a couple new symptoms (side effects). My blood pressure became a problem 2 days after injection. 192/104 highest so far as measured by the cuff they sent home with me.
I called the NIH doctor on call, he got back to me in minutes and asked me to begin the blood pressure (BP) med they sent home with me. A few hours later the head of the entire project walked me through adding a second BP drug and monitored my status from 2 thousand miles away. By 11:30pm his time Sunday night, finally the cuff showed a BP of 138/80 and we said good night. Safe, and I have his cell number. He and all the medical staff - I believe my God is working through their hands to help me and the next guy to heal. Thank you!
Since that first Sunday after the first injection I have been dealing with what time is best to take each drug I am on: Tarceva the chemo drug; a preventive type inhaler drug; Lamictal for depression and two BP drugs. That means the pill schedule I use to deal with fatigue/sleeping, mental fogginess, decreased balance, mild diarrhea and the reverse, flushed face and acne, has to change. What I combine and take when has an impact on my functionality at different segments of the day.
I'm not whining, just saying so you know why my mood changes or my voice sounds off or if I wal funny. Beyond that I am so very grateful my chemo does not cause debilitating sickness - I know many have it worse. And yes, Chemo is still my friend.
Bill
Laughter therapy: watching comedies, telling and hearing jokes and even fake laughing causes our bodies to release feel good healing chemicals. Which leads me to my experience with cancer and laughing and smiling. I have heard zero cancer humor. I have walked the halls of Mayo Clinic, my oncologists office and now at NIH where I return tomorrow.
The only joke I have heard is: "What do you call a waiting room full of people talking about their maladies?" . . . . "An organ recital!" A lot of folks don't even get it. Sometimes if I tell it I get a looks of disapproval. Disapproval not because I am humorous at the wrong time, but rather most anytime I am around cancer patients. A doctor in her closed little room with me commented how refreshing it was to hear a patient express a sense of humor.
At times I do deal with uncomfortable situation with humor - it can be a method of keeping others off guard and at a distance. But other times for me it is just a human way to find light in a very dark piece of life. Grieving needs a break and it turns out taking that break is healthy. Maybe I can mostly just let loose a contagious smile here and there. I need to laugh.
Since receiving the additional drug, Avastin (Bevacizumab Injection) 2 weeks ago I have felt several old symptoms with a new twist and a couple new symptoms (side effects). My blood pressure became a problem 2 days after injection. 192/104 highest so far as measured by the cuff they sent home with me.
I called the NIH doctor on call, he got back to me in minutes and asked me to begin the blood pressure (BP) med they sent home with me. A few hours later the head of the entire project walked me through adding a second BP drug and monitored my status from 2 thousand miles away. By 11:30pm his time Sunday night, finally the cuff showed a BP of 138/80 and we said good night. Safe, and I have his cell number. He and all the medical staff - I believe my God is working through their hands to help me and the next guy to heal. Thank you!
Since that first Sunday after the first injection I have been dealing with what time is best to take each drug I am on: Tarceva the chemo drug; a preventive type inhaler drug; Lamictal for depression and two BP drugs. That means the pill schedule I use to deal with fatigue/sleeping, mental fogginess, decreased balance, mild diarrhea and the reverse, flushed face and acne, has to change. What I combine and take when has an impact on my functionality at different segments of the day.
I'm not whining, just saying so you know why my mood changes or my voice sounds off or if I wal funny. Beyond that I am so very grateful my chemo does not cause debilitating sickness - I know many have it worse. And yes, Chemo is still my friend.
Bill
Monday, August 9, 2010
First Infusion
Our National Institute of Health (NIH) in Bethesda, MD, is something all Americans can feel good about. More medical advances than anywhere else in the world are developed here. It is my good fortune to be part of a research project testing the use of two drugs together to treat my highly unusual type of cancer.
The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.
Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.
They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!
I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.
The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.
I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!
I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill
The drug I have already been of for 1 1/2 years, Tarceva, is the one I have called my "little white pill". It is designed to poison my cancer cells and it does just that. The problem is that it also poisons other parts of my body and it does not kill all the cancer, just enough to make it grow slowly. Slow it has grown, but grow it has and without an additional intervention will at some point be fatal. Hence the reason I tried so hard these past moths to get into the the drug trial at NIH.
Last week I was at NIH for 4 days for poking, prodding, sticking scanning and analyzing. Throw in enough waiting to drive me nuts (short drive) and the first 3 days were full and wore me out. But then . . . . then . . . finally after all the effort I received my first infusion (means shoot up or IV delivery). I was anxious, scared, excited, willing, trusting, sitting in a laid back medical chair waiting while the additional drug was mixed. This drug, Avastin, is designed to cut of the blood supply to cancer cells. Apparently it is expensive so they don't mix it until I actually show up.
They injected it slowly to help watch for adverse reactions - 90 minutes. I dozed a little. And then it was done. I felt some elation, not too much, but definitely an up sense of accomplishment and hope. I rode the shuttle 2 miles back to my hotel, but feeling too good to sit, I went walking in the rain. Yup, I am from Arizona, but I did have an umbrella. Just happened to walk past a Sushi bar - total accident I am sure, but "as Long as I am here" . . . I felt like celebrating and I thoroughly enjoyed every bite!!
I slept well that night and packed for the plane home the next morning. 5 hour flight but passed quickly with good conversation with row mates. Flight was good and it was beyond awesome to see Jacki, I'm talkin' good to the bone and beyond. And then at home a couple hours later, one of their forewarned side effects kicked in - they even sent me home with a blood pressure cuff. I had high blood pressure for the first time in my life.
The doctor on call Friday night gave me good direction and my BP went down enough to go to sleep, but in the morning it was higher again. I called the on call doc again and he said he was going to call Dr Srinivasan, the Head of Research on this project. The guy called me. He walked me through the entire rest of the day, adding small doses of BP medicine as we went, until at 8:30pm my time, ll:30pm his time, my BP was again low enough to feel safe sleeping. At the beginning of the day, I was clueless about high BP - scared. At the end, I knew he cared and was there for me and I felt safe. I have his personal cell number.
I know I have the chronology a little wrong, but the bottom line is the BP symptom started sooner than expected. They stepped up to the plate and hit a home run for me. I am being treated by highly trained medical professionals doing what they love to do, and getting to do it unhampered by insurance companies. The difference in care from this patient's perspective, between the people at NIH and my insurancized (made that one up) oncologist is . . . well . . . like love or money. Thanks!
I keep taking the little white pill, I get and infusion of Avastin every two weeks. The drug trial question then is, are the two drugs together successful enough to warrant going through the side effects. I am game, and your prayers are requested and welcomed, I love you too!
Bill
Tuesday, July 27, 2010
scheduled to fly
After what seems an interminable wait (actually about 2 1/2 weeks) I am now am ticketed to fly and scans and such are scheduled. Fly this Sunday, tests Mon, Tue, wed and first dose of the new drug on thursday. Fly home on Friday.
Largely at my insistence Jacki is not going this time due to finances and it looks like this trip will be relatively simple. Even the reaction to the new drug is supposed to be mild. If it is not I can stay longer. Still, she is torn up and I beg your help for her anyway you can, ie, calls and prayers.
I have been on edge more than in a long time. I have been self centered, impatient and opinionated, needing to be right and sacrificing kindness. I have not been gentle with myself nor others. Sure, much of the time those statements have not been true, but it does harm to myself, others and my relations with you when I act that way.
Falling short of my lofty desire to walk through this challenge as a Spiritual giant leaves me with high levels of oft' times uncomfortable humility. I am a human who has learned to ask forgiveness from my God and you and get back on my side. Thank you so much for your love, compassion and patience.
And God, thank you for this opportunity to help find a cure for PRCC.
Bill
Largely at my insistence Jacki is not going this time due to finances and it looks like this trip will be relatively simple. Even the reaction to the new drug is supposed to be mild. If it is not I can stay longer. Still, she is torn up and I beg your help for her anyway you can, ie, calls and prayers.
I have been on edge more than in a long time. I have been self centered, impatient and opinionated, needing to be right and sacrificing kindness. I have not been gentle with myself nor others. Sure, much of the time those statements have not been true, but it does harm to myself, others and my relations with you when I act that way.
Falling short of my lofty desire to walk through this challenge as a Spiritual giant leaves me with high levels of oft' times uncomfortable humility. I am a human who has learned to ask forgiveness from my God and you and get back on my side. Thank you so much for your love, compassion and patience.
And God, thank you for this opportunity to help find a cure for PRCC.
Bill
Sunday, July 18, 2010
Scheduling
All through this process since initial contact with the NIH, tomorrow has meant "at some future date" usually within a few days. A few weeks ago when I was there and had the biopsy, I was told I would hear results in a week. Turned out to be 11 days. Now, las Tuesday I was told the schedule for my trip to Bethesda would be ready by Friday. 2 days ago. Dare I hope for tomorrow? Hope.
A meeting topic a couple days ago was hope. We drew tickets to determine who shares next (that way God is in charge?). It was slow sharing. Those in the room, recovering drug addicts all, seemed to have very little to say on the topic. A few with drawn tickets passed. Some tickets drawn went unacknowledged. Those who talked had pretty short shares. We who by any earthly definition of fair would be long dead, instead sitting in a room of similar survivors with little to say about hope.
I have for all my adult life had something to say about most anything. But I do remember stumbling on sharing my experience of hope. Using an active sense of the word, "hoping" might be easier to talk about. My handiest dictionary gives one meaning of "hoping" as "go for, plan, be after". Next time the topic is hope I think I will talk about hoping - I know some about go for it and get after it!
Back to present feeling of impatience mixed with fear, resentment, judging - the usual suspects. I hoped last week for schedule done by Friday as she said. Instead the weekend has been too much of the disappointed let down words. Speaking well of myself I have also mixed in patience, understanding, compassion with the other less appealing attitudinal shortcomings. If I want to have a good day it helps to start by lowering my expectations of others.
So, I hope to "get after" scheduling and maybe packing my bags on the morrow. When I do go the action plan is to get scans - CT, brain, PET, cardio, little toe and other assorted pokings and proddings. All to establish a baseline of my physical self to begin my little part of this scientific research project on how to cure papillary renal cell carcinoma metastasized into my lungs. At the least I can be of service to the next guy, and I HOPE it works for me.
Bill
A meeting topic a couple days ago was hope. We drew tickets to determine who shares next (that way God is in charge?). It was slow sharing. Those in the room, recovering drug addicts all, seemed to have very little to say on the topic. A few with drawn tickets passed. Some tickets drawn went unacknowledged. Those who talked had pretty short shares. We who by any earthly definition of fair would be long dead, instead sitting in a room of similar survivors with little to say about hope.
I have for all my adult life had something to say about most anything. But I do remember stumbling on sharing my experience of hope. Using an active sense of the word, "hoping" might be easier to talk about. My handiest dictionary gives one meaning of "hoping" as "go for, plan, be after". Next time the topic is hope I think I will talk about hoping - I know some about go for it and get after it!
Back to present feeling of impatience mixed with fear, resentment, judging - the usual suspects. I hoped last week for schedule done by Friday as she said. Instead the weekend has been too much of the disappointed let down words. Speaking well of myself I have also mixed in patience, understanding, compassion with the other less appealing attitudinal shortcomings. If I want to have a good day it helps to start by lowering my expectations of others.
So, I hope to "get after" scheduling and maybe packing my bags on the morrow. When I do go the action plan is to get scans - CT, brain, PET, cardio, little toe and other assorted pokings and proddings. All to establish a baseline of my physical self to begin my little part of this scientific research project on how to cure papillary renal cell carcinoma metastasized into my lungs. At the least I can be of service to the next guy, and I HOPE it works for me.
Bill
Friday, July 9, 2010
I am In!!!
Just got off the phone with my lead Doc at NIH - I am in the trial!!! I go back to Bethesda soon for initial comparative tests, ct scan, brain scan, pet scan - the works.
I sent text to Jacki saying, "It's all gonna turn out good Baby. I am with you for a long time and lots more loving you!"
Relief, joy, hope, humility and gratitude are filling me up!!! Sure, a long road on the trial is ahead, but I have a great sense of being one of the early successes in this new treatment for mPRCC. Thank all of you for your prayers and thank God for the opportunity to be part of the solution for this "untreatable" form of cancer! I am too excited to sit, gotta go!
Bill
I sent text to Jacki saying, "It's all gonna turn out good Baby. I am with you for a long time and lots more loving you!"
Relief, joy, hope, humility and gratitude are filling me up!!! Sure, a long road on the trial is ahead, but I have a great sense of being one of the early successes in this new treatment for mPRCC. Thank all of you for your prayers and thank God for the opportunity to be part of the solution for this "untreatable" form of cancer! I am too excited to sit, gotta go!
Bill
Wednesday, July 7, 2010
delay
Direct quote this morning from Chief Nurse of the drug trial,
"I wish I had the answer today, but we hope to review pathology this week on your biopsy. We will contact you as soon as we review."
Certainly this is an opportunity to practice faith trust and patience. However, each episode of this drama raises a little hope followed by a week of waiting for the next. Could we at least get some comedies with Super Bowl advertisements in between?
"Take away my fears and doubts so that I may better demonstrate Your presemce in my life."
Bill
"I wish I had the answer today, but we hope to review pathology this week on your biopsy. We will contact you as soon as we review."
Certainly this is an opportunity to practice faith trust and patience. However, each episode of this drama raises a little hope followed by a week of waiting for the next. Could we at least get some comedies with Super Bowl advertisements in between?
"Take away my fears and doubts so that I may better demonstrate Your presemce in my life."
Bill
Monday, July 5, 2010
Ready for news
Went to Bethesda two weeks ago. Had a needle in the kidney biopsy 12 days a go. Because the drug trial is a scientific research project, they must determine type of cancer for themselves rather than rely on the highly invasive biopsy 18 mos ago. Results expected Tue or Wed this week. If type of cancer cell is as previously diagnosed, then we will learn the plan. If is a different type of cell, then NIH said they are interested in my case anyway - whatever that means.
Since the biopsy I have learned my monthly COBRA payment for health insurance goes this month from $360 to $840. COBRA lasts three more months, and then BCBS is required to sell me individual insurance - at whatever fee they deem appropriate. Hmmmmmmmmmm, I wonder how much?
I will let you know as I hear more this week. My bags are packed.
Bill
Since the biopsy I have learned my monthly COBRA payment for health insurance goes this month from $360 to $840. COBRA lasts three more months, and then BCBS is required to sell me individual insurance - at whatever fee they deem appropriate. Hmmmmmmmmmm, I wonder how much?
I will let you know as I hear more this week. My bags are packed.
Bill
Thursday, June 24, 2010
NIH - Bethesda, MD - DC
We arrived Monday nite late - given the 3 hour time difference, it wass really late. Checked into this funky little hotel near NIH with a shuttle that runs to and from. The hotel? Very nice architecture, nicely furnished, good bed and shower. Both drains drain. Good sheets. And then we get to the cost cutting measures: thin towels, motel six soap, no hot water at night. A bit shaky elevator; view of the building next door. Of course, it costs about 1/3 as much as the nicer places. Some good, some bad, inexpensive, we'll take it.
I'd guess within a mile there are 15 different ethnic restaurants. Two miles away we found my favorite salad bar ever. Organic, vegan, or chicken/tuna. Did you know falafel is a great source of protein?
We had Tuesday to get the lay of the land and went to the Viet nam Memorial Wall, and the Lincoln monument. I cannot describe the welling up of a feeling of what? Patriotism. A proud sense of our own history as well as the sacrifices made. Whatever political stance or sense of right and wrong, these monuments stand for something gut level important. As a nation we have not always done the right thing, but our soldiers have died for our ability to try and get it right. I was amazed at how standing in the presence of so much history overwhelmed me.
NIH. National Institute of health. This is a government run center for medical research. Already we have me people with numerous types of cancer cells destructively wandering around in our bodies. The chins are up I think because we all know we are doing something good, perhaps for ourselves, but for sure for the next guy. The people who work at NIH: nurses, doctors, research statisticians, cafeteria, drivers, security, on and on, all seem full of a positive attitude of doing something good. We see medical personnel, some of the best in their field, unfettered by insurance companies, and allowed to put patient care first. How much money they make set aside because they get to do what they trained to do. I am inspired.
Apparently they find my case quite interesting. It all boils down to a tiny little type of cancerous cell - slight possibility it is not papillary, but if not then a new twist on what has been IDed before. They took a couple small samples of my kidney tumor today, to be analyzed by a super pathologist like House, but differfent specialty, and with people skills.In ten days or so I will have that info and a team of kidney cancer research doctors will have recommendation about where my case fits in their research and drug trials picture. Hopefully another thread in a blanket f solutions.
Bill
I'd guess within a mile there are 15 different ethnic restaurants. Two miles away we found my favorite salad bar ever. Organic, vegan, or chicken/tuna. Did you know falafel is a great source of protein?
We had Tuesday to get the lay of the land and went to the Viet nam Memorial Wall, and the Lincoln monument. I cannot describe the welling up of a feeling of what? Patriotism. A proud sense of our own history as well as the sacrifices made. Whatever political stance or sense of right and wrong, these monuments stand for something gut level important. As a nation we have not always done the right thing, but our soldiers have died for our ability to try and get it right. I was amazed at how standing in the presence of so much history overwhelmed me.
NIH. National Institute of health. This is a government run center for medical research. Already we have me people with numerous types of cancer cells destructively wandering around in our bodies. The chins are up I think because we all know we are doing something good, perhaps for ourselves, but for sure for the next guy. The people who work at NIH: nurses, doctors, research statisticians, cafeteria, drivers, security, on and on, all seem full of a positive attitude of doing something good. We see medical personnel, some of the best in their field, unfettered by insurance companies, and allowed to put patient care first. How much money they make set aside because they get to do what they trained to do. I am inspired.
Apparently they find my case quite interesting. It all boils down to a tiny little type of cancerous cell - slight possibility it is not papillary, but if not then a new twist on what has been IDed before. They took a couple small samples of my kidney tumor today, to be analyzed by a super pathologist like House, but differfent specialty, and with people skills.In ten days or so I will have that info and a team of kidney cancer research doctors will have recommendation about where my case fits in their research and drug trials picture. Hopefully another thread in a blanket f solutions.
Bill
Thursday, June 17, 2010
Getting ready to go . . . Facebook in the way
I have a sponsee writing on diversion, hocus pocus change the focus. It is one method of steering others and myself away from what is too close, too vulnerable, too human. It is a way to keep away even those who I would prefer to draw in close. Sure, sometimes diversion skills are an asset for protecting and filtering who gets near. But when, as for me today, it functions to avoid or deny and hide what is going on inside myself, then it is a liability.
Facebook has grabbed my all too willing focus. Started my page a couple days ago, gave it an hour yesterday, and I don't know nor want to admit how long today. Found a couple old friends I miss and another I do not. One ex-wife. Curiosity, and I wish her well. That one was tough on us both, but great practice for the Wonder I have the past few years with Jacki. Maybe facebook is a way to communicate with acquaintances, but do I want to invest my box of energy each day in chatter on my "wall"? So far the Facebook thing is on shaky ground for me. The account is closeable but it sucks me in. And it functioned today to divert me away from slow rolling wave of turmoil about our trip to NIH in a few days.
Google Earth can show me what the facility looks like from a couple different views. I can see our nearby hotel and the coffee bar across the street. I found a horizontal view of "The Wall". And I can scope out the Metro public transit for getting around DC. The logistics of our travel are daunting - it is not my strong point. but I can do it. It is all new and I have questions unanswerable: How does getting around in DC fit with being chemo mushy each afternoon? I really want to visit our Capitol, and I REALLY want to go to the Wall. All of this will work out fine. Trying to nail it all from Arizona, serves mostly as another diversion away from the reason we are going.
I am not officially in the drug trial yet. I thought I was in already but hmmmm, I was wrong. The researchers want to biopsy my kidney tumor, just the stick a needle into my kidney method. No major invasive thing like last year cutting out some lung tissue. For a year and a half I have believed I have terminal mPRCC, papillary renal cell carcinoma metastasized into my lungs. Now, for the research of a new drug, they must directly biopsy my kidney tumor to make scientifically certain my version of kidney cancer is papillary. Remember, papillary is what makes it a bit rare and unstoppable.
This "gotta make sure biopsy' has me more than a little anxious. Scared, angry, nervous, consumed. What if they diagnosed wrong 18 months ago? What if it is papillary but I still don't get in the drug trial? What if, what if, what if, coulda woulda shouda. Where is my trust God, clean house and do the next right thing? I want to know right now! I hate being in the dark.
I can say all the right things and get all intellectual about it, but the truth is that I have been hiding on Facebook. I don't want to feel this stuff. A good addict would go get an eight-ball or two, but nooooooooo. I am a Recovering addict sitting here trying to get at the truth which I am so good at stuffing. I want the peace and serenity that comes from facing it, leaning into it and knowing that my God is as close as the breath at my cheek. Crying is still okay - can you see the drop?
Bill
Facebook has grabbed my all too willing focus. Started my page a couple days ago, gave it an hour yesterday, and I don't know nor want to admit how long today. Found a couple old friends I miss and another I do not. One ex-wife. Curiosity, and I wish her well. That one was tough on us both, but great practice for the Wonder I have the past few years with Jacki. Maybe facebook is a way to communicate with acquaintances, but do I want to invest my box of energy each day in chatter on my "wall"? So far the Facebook thing is on shaky ground for me. The account is closeable but it sucks me in. And it functioned today to divert me away from slow rolling wave of turmoil about our trip to NIH in a few days.
Google Earth can show me what the facility looks like from a couple different views. I can see our nearby hotel and the coffee bar across the street. I found a horizontal view of "The Wall". And I can scope out the Metro public transit for getting around DC. The logistics of our travel are daunting - it is not my strong point. but I can do it. It is all new and I have questions unanswerable: How does getting around in DC fit with being chemo mushy each afternoon? I really want to visit our Capitol, and I REALLY want to go to the Wall. All of this will work out fine. Trying to nail it all from Arizona, serves mostly as another diversion away from the reason we are going.
I am not officially in the drug trial yet. I thought I was in already but hmmmm, I was wrong. The researchers want to biopsy my kidney tumor, just the stick a needle into my kidney method. No major invasive thing like last year cutting out some lung tissue. For a year and a half I have believed I have terminal mPRCC, papillary renal cell carcinoma metastasized into my lungs. Now, for the research of a new drug, they must directly biopsy my kidney tumor to make scientifically certain my version of kidney cancer is papillary. Remember, papillary is what makes it a bit rare and unstoppable.
This "gotta make sure biopsy' has me more than a little anxious. Scared, angry, nervous, consumed. What if they diagnosed wrong 18 months ago? What if it is papillary but I still don't get in the drug trial? What if, what if, what if, coulda woulda shouda. Where is my trust God, clean house and do the next right thing? I want to know right now! I hate being in the dark.
I can say all the right things and get all intellectual about it, but the truth is that I have been hiding on Facebook. I don't want to feel this stuff. A good addict would go get an eight-ball or two, but nooooooooo. I am a Recovering addict sitting here trying to get at the truth which I am so good at stuffing. I want the peace and serenity that comes from facing it, leaning into it and knowing that my God is as close as the breath at my cheek. Crying is still okay - can you see the drop?
Bill
Thursday, June 10, 2010
I G T N M T
I am not in charge of scheduling. I do not have control of my own calendar. Swim up river, or go with the flow - a daily choice. Maybe some of you have noticed, I am more than a wee bit hard headed. And, as you can see, I am willing these days to own that I am readily impatient and want what I want when I want it. Let's get on the plane to Bethesda right now!!!
For the past few years, I have done an in depth, very personal (though quite scientific I assure you) study of the word 'cordial'.
CORDIAL:
1. (1) affable, amiable, cordial, genial
(diffusing warmth and friendliness; "an affable smile"; "an amiable gathering"; "cordial relations"; "a cordial greeting"; "a genial host")
2. cordial
(politely warm and friendly; "a cordial handshake")
Most who know me recognize the first definition as a blueprint of me in a crowd. It is easy for me to circulate, smile, hug and chat before bouncing to the next party.
However, the 2nd and subtly different definition is more difficult for me. This version of cordial I utilize for the phone calls with tech support, billing people or the merchandise return counter at Best Buy. Speaking well of my growth in recovery (or at least in age), this 'cordial' replaces verbal assaults on some worker bee doing as their boss and bosses" boss told them to do. Even tougher were the collections people I fended off in bygone days. Of course back then I was not concerned with being cordial.
So, all that leads me to I G T N M T. In God's Time not My Time. Finally getting scheduled to go to Bethesda, MD, home of the National Institute of Health, National Cancer Institute chapter, has been a cordiality trial. It is a government entity after all. I sailed through with relative ease dealing with the Chief Nurses who basically handle the implementation of the drug trial. But then, at the end of the scheduling process, we learned that I was not in their system. My name nor my records. And she warned, "We can't push the admin office." Her voice of past experience I am sure. Cordial Bill, cordial.
At last, the green light was given, the date was set and, she said "I will send this to our travel agent to arrange the flight". All right! Being cordial will be effortless with a travel agent, they are all friendly and helpful right? And she was, right up to where I said Jacki is coming also and we want on the same flight. I could hear and feel the weather change. A challenge, out of the routine, not part of her plan. She really expected flying on separate jets would be fine. Now the anti-cordial clouds arose on my end. My brain raced with retorts and cuts and of course the penultimate "let me talk to your supervisor!" which comes only before slamming the phone down in a show of POWER!!!
Happily instead all stayed calm in Mudville that day. Casey did not strike out - I was cordial. Having landed on that word 'cordial' only a couple years ago, the practice since has paid off. Jacki and I are on the same flight, staying a few days past the agent's preconceived notion, flying out of Phoenix on June 21st and returning June 27th. See the Capitol, visit "The Wall", get a meeting list for my collection and maybe eat DC sushi. Oh yeah, and begin the on site process of being in the drug trial. Thank God.
Bill
For the past few years, I have done an in depth, very personal (though quite scientific I assure you) study of the word 'cordial'.
CORDIAL:
1. (1) affable, amiable, cordial, genial
(diffusing warmth and friendliness; "an affable smile"; "an amiable gathering"; "cordial relations"; "a cordial greeting"; "a genial host")
2. cordial
(politely warm and friendly; "a cordial handshake")
Most who know me recognize the first definition as a blueprint of me in a crowd. It is easy for me to circulate, smile, hug and chat before bouncing to the next party.
However, the 2nd and subtly different definition is more difficult for me. This version of cordial I utilize for the phone calls with tech support, billing people or the merchandise return counter at Best Buy. Speaking well of my growth in recovery (or at least in age), this 'cordial' replaces verbal assaults on some worker bee doing as their boss and bosses" boss told them to do. Even tougher were the collections people I fended off in bygone days. Of course back then I was not concerned with being cordial.
So, all that leads me to I G T N M T. In God's Time not My Time. Finally getting scheduled to go to Bethesda, MD, home of the National Institute of Health, National Cancer Institute chapter, has been a cordiality trial. It is a government entity after all. I sailed through with relative ease dealing with the Chief Nurses who basically handle the implementation of the drug trial. But then, at the end of the scheduling process, we learned that I was not in their system. My name nor my records. And she warned, "We can't push the admin office." Her voice of past experience I am sure. Cordial Bill, cordial.
At last, the green light was given, the date was set and, she said "I will send this to our travel agent to arrange the flight". All right! Being cordial will be effortless with a travel agent, they are all friendly and helpful right? And she was, right up to where I said Jacki is coming also and we want on the same flight. I could hear and feel the weather change. A challenge, out of the routine, not part of her plan. She really expected flying on separate jets would be fine. Now the anti-cordial clouds arose on my end. My brain raced with retorts and cuts and of course the penultimate "let me talk to your supervisor!" which comes only before slamming the phone down in a show of POWER!!!
Happily instead all stayed calm in Mudville that day. Casey did not strike out - I was cordial. Having landed on that word 'cordial' only a couple years ago, the practice since has paid off. Jacki and I are on the same flight, staying a few days past the agent's preconceived notion, flying out of Phoenix on June 21st and returning June 27th. See the Capitol, visit "The Wall", get a meeting list for my collection and maybe eat DC sushi. Oh yeah, and begin the on site process of being in the drug trial. Thank God.
Bill
Thursday, May 27, 2010
Sort this out . . .
Okay, so those who read this blog know that a clinical trial testing my current drug along with a second chemo drug is finally approved and ready to start bringing testees in to begin. Did I spell that right? Or is it testes? Well, it is true that we who volunteer might be nuts. Anyway, 10 days ago I learned the trial is officially open.
Next they asked for my most recent ct scan report (from late March), and next day they wanted the disc itself. Wait a few days . . . now they wanted my latest bloodwork. Wait a few days . . . I called today and the head research nurse quickly called me back. 1st she said I do not have papillary kidney cancer. i reminded her that three pathologists including theirs have agreed it is papillary. Then she found the correct patient folder and agreed. Then she said that first they want me to come to Bethesda for a Kidney biopsy.
Kidney biopsy? 15 months ago I had that awful lung biopsy to test the nodules that metastasized from my kidney tumor. They cut three chunks out of my lungs because the kidney "is a bleeder". So now the NIH wants to what, verify that what morphed to the lungs is the same as what it morphed from? I don't f'in know.
So, I asked about scheduling and learned that after the long weekend she will figure that out with the biopsy specialist. Supposedly I will know by end of the week. After talking with her (I was gracious) I did not get into an accepting patience mode. i spun for a while. 2nd guessing, what iffing and catastrophizing. In my head I know it will be alright, I can trust God, and I need not worry.
The hard part now, is getting that comfort 13 inches from my head to my heart. Peace, kindness, gratitude, patient, open minded, honoring, serene surrender. It is almost meditative just typing those words.
Our annual recovery convention is this weekend - @ 1200 addicts gathering for fun, food, speakers, workshops, dancing, comedy show and . . . no drugs. 1200 people arm in arm, saying the Serenity Prayer - the room resonates. Saturday night after the dinner, we do a clean time countdown. We start at probably 35 years clean, and a couple might stand up. Then 33, 32, 31, and so on, with higher numbers of addicts standing up as the years get fewer. We will probably have approaching 100 members this year standing for over 20 years clean. By the time we get to my 16 years, I am one of many and the clapping and yelling gets louder. Then as the years and then months go down the chanting starts, "Keep coming back". When we get to just days clean, 30, 29, 28, so on, the room is roaring with Spirit filled memories each of us has of being newly clean. The miracle of each of us multiplied by over a thousand hope to die drug addicts who no longer have to live that way.
I heard a guy share at a meeting last week about being six years clean now, but still feeling the overwhelming love/fear/excitement/joy/bewilderment of being the one addict in that whole convention hall, at that dinner, who had just ONE day clean. He cried telling us about it now, saying he never before felt as cared for and loved as he did that night six years ago. The heady atmosphere of gratitude, the pulsating Power in that room, far greater than the disease we call addiction. It shoots warmth to the depths of my soul and comes back out as shivers of awe up my spine. I know you can feel it too, right now. I go back every year wanting more. Still and addict, wanting more of living clean. What cancer?
Bill
Next they asked for my most recent ct scan report (from late March), and next day they wanted the disc itself. Wait a few days . . . now they wanted my latest bloodwork. Wait a few days . . . I called today and the head research nurse quickly called me back. 1st she said I do not have papillary kidney cancer. i reminded her that three pathologists including theirs have agreed it is papillary. Then she found the correct patient folder and agreed. Then she said that first they want me to come to Bethesda for a Kidney biopsy.
Kidney biopsy? 15 months ago I had that awful lung biopsy to test the nodules that metastasized from my kidney tumor. They cut three chunks out of my lungs because the kidney "is a bleeder". So now the NIH wants to what, verify that what morphed to the lungs is the same as what it morphed from? I don't f'in know.
So, I asked about scheduling and learned that after the long weekend she will figure that out with the biopsy specialist. Supposedly I will know by end of the week. After talking with her (I was gracious) I did not get into an accepting patience mode. i spun for a while. 2nd guessing, what iffing and catastrophizing. In my head I know it will be alright, I can trust God, and I need not worry.
The hard part now, is getting that comfort 13 inches from my head to my heart. Peace, kindness, gratitude, patient, open minded, honoring, serene surrender. It is almost meditative just typing those words.
Our annual recovery convention is this weekend - @ 1200 addicts gathering for fun, food, speakers, workshops, dancing, comedy show and . . . no drugs. 1200 people arm in arm, saying the Serenity Prayer - the room resonates. Saturday night after the dinner, we do a clean time countdown. We start at probably 35 years clean, and a couple might stand up. Then 33, 32, 31, and so on, with higher numbers of addicts standing up as the years get fewer. We will probably have approaching 100 members this year standing for over 20 years clean. By the time we get to my 16 years, I am one of many and the clapping and yelling gets louder. Then as the years and then months go down the chanting starts, "Keep coming back". When we get to just days clean, 30, 29, 28, so on, the room is roaring with Spirit filled memories each of us has of being newly clean. The miracle of each of us multiplied by over a thousand hope to die drug addicts who no longer have to live that way.
I heard a guy share at a meeting last week about being six years clean now, but still feeling the overwhelming love/fear/excitement/joy/bewilderment of being the one addict in that whole convention hall, at that dinner, who had just ONE day clean. He cried telling us about it now, saying he never before felt as cared for and loved as he did that night six years ago. The heady atmosphere of gratitude, the pulsating Power in that room, far greater than the disease we call addiction. It shoots warmth to the depths of my soul and comes back out as shivers of awe up my spine. I know you can feel it too, right now. I go back every year wanting more. Still and addict, wanting more of living clean. What cancer?
Bill
Monday, May 17, 2010
Trial is open
Wow! Finally the drug trial at the NIH in Bethesda, MD is open. Jacki and I have been waiting with bated breath for what seems six months but has been only 3. The wait has been a bit tortuous, because this trial at least gives a sense of doing SOMETHING.
I can live my life one day at a time, trust God, hope and believe and get into gratitude for the life I already enjoy. AND, the bottom line about this cancer is it is terminal without some new treatment. No matter how spiritual I can be most of the time, along with all the positive stuff is the sense of watching myself wither.
I just found out minutes ago the trial is open which I think means they can start bringing patients on board. They asked by e-mail for my most recent scan and report, and I emailed the report about 10 minutes afyter their message. Johnny on the spot, early bird gets the worm, good boy scout - I am ready. Let's get the show on the road. Do I sound excited?
Bill
I can live my life one day at a time, trust God, hope and believe and get into gratitude for the life I already enjoy. AND, the bottom line about this cancer is it is terminal without some new treatment. No matter how spiritual I can be most of the time, along with all the positive stuff is the sense of watching myself wither.
I just found out minutes ago the trial is open which I think means they can start bringing patients on board. They asked by e-mail for my most recent scan and report, and I emailed the report about 10 minutes afyter their message. Johnny on the spot, early bird gets the worm, good boy scout - I am ready. Let's get the show on the road. Do I sound excited?
Bill
Thursday, April 29, 2010
Elephant in my blog living room
I see 106 posts on my blog since its beginning a year or so ago. Always, a huge piece of my picture I have left out. Why? Fear. It is unspoken but with a hand full of those in my herd. I fear being judged. i fear the stigma. I fear feeling less than. My excuse is often that I do not want newcomers around my twelve step program to see a pill as a quick fix for this elephant. Get into the 12 steps first. The real reason for not telling is the maybe only self imposed stigma.
I have chronic depression. With the steps and later the outside help we call therapy, the truth unfolded. I can see cycles of depression all the way back to adolescence. My annual Social security reports about income and how much SS we can receive if we retire - well, they show a history of major ups a downs in income. From 175K to zero. One year 25K and two years later 80K.
When first i was diagnosed with depression, I had been largely unable to leave the house for near a year. It felt like slogging through mud - everyday. Not suicidal, but mental and physical lethargy. Everyday. Income was zero that year. I seldom answered the phone nor the door. I lived alone and stayed alone - isolation. Looking back It is difficult to believe how deeply the heaviness glommed onto my entire being.
I saw my GP in about 2002, described what I felt and he suggested Paxil, an antidepressant. I had known for years that something was wrong, but denial is not a river in Egypt. I did not want to have depression and I had even ridiculed those who had it. I once made fun of a guy who talked about his suffering, and a couple months later he was dead. Okay, I did not cause his death, but perhaps I threw another rock into the bag that weighed him down. I now feel empathy and sorrow thinking of him.
The Paxil made a difference immediately. I got my life back. 9 months or a year later, I figured I did need it anymore and tapered down to zero. For a few months I was okay but then . . . the mud gradually got thicker and the glom enveloped me again within just 4 or 5 months. Nothing in particular triggered the spiral. It just settled around me.
I told my doc and he referred me to a professional in appropriate therapy. We tried Paxil then most all the other medicines. Wean on, not work, wean off then try something different. For a couple years those on and off cycles continued until, finally, we found the right one for me. Did you know that the usual antidepressants work for only about 50 or 60% of patients?
The stigma is here - I know you feel it too. Why the stigma? Treating any other part of the human body for whatever ailment is what we do. That is okay and even required. But for this and only this part of the body, this organ we call brain, the stigma applies. My cancer has no stigma but my depression even I judge.
Now I have both, well actually 3 diseases: cancer, depression, and addiction. They may well exacerbate each other. Much evidence suggests that drug use is a form of self medication for depression. I do not understand the interrelationships, but I know I is one of all the above.
Now. the Tarceva daily poison we call chemo, and my depression medicine seem to interact in counter active ways. What if the Tarceva can work better with less or none of the other pills. Only one way to find out. Wish me luck . . . no, pray for me. Thanks.
Bill
I have chronic depression. With the steps and later the outside help we call therapy, the truth unfolded. I can see cycles of depression all the way back to adolescence. My annual Social security reports about income and how much SS we can receive if we retire - well, they show a history of major ups a downs in income. From 175K to zero. One year 25K and two years later 80K.
When first i was diagnosed with depression, I had been largely unable to leave the house for near a year. It felt like slogging through mud - everyday. Not suicidal, but mental and physical lethargy. Everyday. Income was zero that year. I seldom answered the phone nor the door. I lived alone and stayed alone - isolation. Looking back It is difficult to believe how deeply the heaviness glommed onto my entire being.
I saw my GP in about 2002, described what I felt and he suggested Paxil, an antidepressant. I had known for years that something was wrong, but denial is not a river in Egypt. I did not want to have depression and I had even ridiculed those who had it. I once made fun of a guy who talked about his suffering, and a couple months later he was dead. Okay, I did not cause his death, but perhaps I threw another rock into the bag that weighed him down. I now feel empathy and sorrow thinking of him.
The Paxil made a difference immediately. I got my life back. 9 months or a year later, I figured I did need it anymore and tapered down to zero. For a few months I was okay but then . . . the mud gradually got thicker and the glom enveloped me again within just 4 or 5 months. Nothing in particular triggered the spiral. It just settled around me.
I told my doc and he referred me to a professional in appropriate therapy. We tried Paxil then most all the other medicines. Wean on, not work, wean off then try something different. For a couple years those on and off cycles continued until, finally, we found the right one for me. Did you know that the usual antidepressants work for only about 50 or 60% of patients?
The stigma is here - I know you feel it too. Why the stigma? Treating any other part of the human body for whatever ailment is what we do. That is okay and even required. But for this and only this part of the body, this organ we call brain, the stigma applies. My cancer has no stigma but my depression even I judge.
Now I have both, well actually 3 diseases: cancer, depression, and addiction. They may well exacerbate each other. Much evidence suggests that drug use is a form of self medication for depression. I do not understand the interrelationships, but I know I is one of all the above.
Now. the Tarceva daily poison we call chemo, and my depression medicine seem to interact in counter active ways. What if the Tarceva can work better with less or none of the other pills. Only one way to find out. Wish me luck . . . no, pray for me. Thanks.
Bill
Saturday, April 24, 2010
Run the gamut to gratitude
Everyday I run the gamut through sad and mad, scared and worried, regret, grief and sometimes moments of despair. Almost always however, those tough emotions wind up leading to gratitude. Gratitude for the wondrous life I have experienced since getting clean and into recovery over 16 years ago. Gratitude for the strong foundation of morals and values I was given growing up, lost during active addiction, but still there at getting clean. Gratitude for grace, unearned gifts, appreciated only as my recovery spurred spiritual awakenings and growth. I have learned to notice the miraculous world where within I live.
The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.
What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.
My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.
Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.
Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.
At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.
No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.
Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill
The gifts I value most are the relationships with people near and distant from my little space. Last night at a meeting I heard the speaker talk of her herd. Like elephants the herd gathers around the injured, sick, wounded, old and young. We lean on each other, knowing now that our very existence is meant to be a part of rather than apart from. The herd I am part of has gathered around so many others before and now for over a year, they just will not leave me alone. I mean that endearingly; I am never really alone because I am in the presence of the God I understand. The people of my herd come close reminding me of that unending unbroken presence. Some of the "elephants" I thought I did not know have gathered round - overwhelming comfort and love.
What beauty stands next to me in the herd. My wondrous wife Jacki. She carries this load as much or more than I yet she stands tall and walks through. Sometimes she seems to drag me along. Often she inspires me to wash through the emotional wringer that comes magnified by cancer with so many little life bumps. I believe that if the tables were turned I would stand next to her but that's not the shoe on my foot. I get to see more of the depth of her goodness, not just with me, but with all in her path. I get to see more of the little girl openly experiencing her gamut of emotions. In-to-me-you-see. I love her beyond what seemed my capacity to love.
My daughter Kate. This love, of a different bent, comes so close to the power with Jacki. Kate is in my bones and flows through my veins. She is here for me and walks through what I am so sad she must. Closer we are than when she was 5 or 6. I stole time from her in the last few years before recovery. Then we began to grow together again. But then she stole the time inadvertently turning the table. Yet, miraculously she returned from the neverland nightmare of every parent. Since then our bond has healed and now our adversity adds glue.
Family, friends, sponsor and sponsees, others near and far, including you the reader - I live within a herd.
Cancer still extracts its due everyday. Most scary, though sometimes amusing, are the altered skills of social interaction. Sometimes it hurts the other person. More readily escaping my lips are irretrievable word barbs. My sarcasm is heightened, at times shredding the flesh of interaction with others. My indirect communications are tuned into subtle controls that later leave others with the taste of insult. Oh what the hell, just say it like it is Bill - my words hurt others more often than before.
In recovery I have learned to make amends, set things right. But some days it is tough to keep up.
At times, my more awkward attempts and communicating include grasping for words that used to be readily available. I get tongue tied. I forget more than an allowance for age. Sometimes this is funny, always it is humbling, and sometimes it just plain scares me. I can be sad about missing wit.
No bicycling, no driving after noon. less energy, breathing more difficult, the nasty daily effects of taking my little white pill of poison. It does work to slow cancer's growth so it is my friend, right? I do not want to trade with those on IV chemo a couple times a week, debilitating for days. The wait for the drug trial in Bethesda with the National Institute of health - it seems tortuous and it seems like 6 months, but really has only been six weeks.
Whatever the tough parts, I think the pain is shared amongst my herd, not piled on just me or any one else. I came to recovery with the smell of an unspoken elephant in the living room. Now, I am grateful for the magnificent herd all around. Thank you!
Bill
Sunday, April 11, 2010
What's gonna come out here?
Would that I could write this knowing noone is going to read it. Sure, I could write in some private spot, sduch as a word doc or a journal kep in my machine. My ego not so secretly wants to be read, but sometimes it can come out of me without much interference from ego. I want to look good, but more importantly especially now, I want to feel good.
Writing here was regular for about 10 months, and has tapered down to nearly zero. I do not know why, but I do know I have felt crappy between my own ears recently. The physical symptoms have gradually worsened though still not debilitating for more than 4 or 5 hours a day. Worse has been the mental/emotional . I had a couple conversations the past 2 weeks about I was so tired of being so sensitive and how I had just been putting emotions on the shelf. But as soon as I verbalized that a couple times, the crying began to trigger more readily. The weight of having incurable cancer began to feel heavier than last couple months. All the what's gonna happen to my family, friends etc? What will Jacki have to deal with - I just hate what this is and will put her through.
Some things do not help and instead make things worse. e had a trip to Hawaii planned for next week. In my mind it was sort of a "bucket list" item of a last big trip. Rather morose perhaps, but that is how it felt. Then the opportunity to be part of the new drug trial came up and changed the picture. Maybe I don't have to die antytime soon. However the timing of the trial and timing of Hawaii conflicted. Going back and forth to Bethesda changed our financial picture. We could not afford Hawaii and Bethesda travel. The timing is off. So we cancelled Hawaii.
The airline at first was fine with cancelling, and even said a letter from the doctors in Bethesda would work and we would get our airfare back in a week or so. But then they informed us that because we had trip imsuirance we would have to go through an insurance company. The nightmare began, Insurance- nightmare - the stereotype. They want reports from last six doctors, copies of office visit notes, proof of diagnosis. I think the requirements are a list of twelve items. To me it feels like a ton of weight and I just do not have the extra mental energy already in short supply.
Then I ask my oncologist for a copy of his notes. I receive them and read something that makes all that I go through sound like a cake walk. So now I get to confront my doc over his watered down notes. The notes indicate how really involved he no longer is in my case - he doesn't even know what
's going on. Another small draing action required to get his accurat report for the insurancel.
Is my COBRA running out soon? When would Medicare kick in? We received a bill for $1200 for my recent CT scan. Chest, abdomen and pelvis, over $700 each. All in one scan, but billed as three separate events. Jacki is working hard at her job and dealing with her end of this cancer scene. My job is dealing with these seemingly minor issues. My head, and most of anybody's heads view my symptoms and tasks as minor. But it all feels near insurmountable to me. Sure, I know, one bite at a time.
So, I get up in the morning, do our coffee, bring it and the paper to jacki, read the paper and work Soduko with Jacki. Good quality time with my wife. Then she is off to work leaving about 3 hours for me to get things done before taking the little white pill of cancer slowing poison. Then I get to be non functional for 5 hours, give or take, Can't walk straight, drive, climb stairs.. I can talk, but look out for whatever words might leave my lips. That leaves about 3 hours in the evening before I am just too tired to do much at all. Recovery meetings, be a sponsor, be social and then lounge with the energy left over before twilight zone lethargy. Everyday. Everyday. Everyday.
The price the pill extracts for breaking it's scheduled demands is increased dysfunction for the next day or 2. I will not read this over beore clicking on publish. here it is unexpurgated. My hunch is it comes off as complaining. Some days are just like that.
Bill
Writing here was regular for about 10 months, and has tapered down to nearly zero. I do not know why, but I do know I have felt crappy between my own ears recently. The physical symptoms have gradually worsened though still not debilitating for more than 4 or 5 hours a day. Worse has been the mental/emotional . I had a couple conversations the past 2 weeks about I was so tired of being so sensitive and how I had just been putting emotions on the shelf. But as soon as I verbalized that a couple times, the crying began to trigger more readily. The weight of having incurable cancer began to feel heavier than last couple months. All the what's gonna happen to my family, friends etc? What will Jacki have to deal with - I just hate what this is and will put her through.
Some things do not help and instead make things worse. e had a trip to Hawaii planned for next week. In my mind it was sort of a "bucket list" item of a last big trip. Rather morose perhaps, but that is how it felt. Then the opportunity to be part of the new drug trial came up and changed the picture. Maybe I don't have to die antytime soon. However the timing of the trial and timing of Hawaii conflicted. Going back and forth to Bethesda changed our financial picture. We could not afford Hawaii and Bethesda travel. The timing is off. So we cancelled Hawaii.
The airline at first was fine with cancelling, and even said a letter from the doctors in Bethesda would work and we would get our airfare back in a week or so. But then they informed us that because we had trip imsuirance we would have to go through an insurance company. The nightmare began, Insurance- nightmare - the stereotype. They want reports from last six doctors, copies of office visit notes, proof of diagnosis. I think the requirements are a list of twelve items. To me it feels like a ton of weight and I just do not have the extra mental energy already in short supply.
Then I ask my oncologist for a copy of his notes. I receive them and read something that makes all that I go through sound like a cake walk. So now I get to confront my doc over his watered down notes. The notes indicate how really involved he no longer is in my case - he doesn't even know what
's going on. Another small draing action required to get his accurat report for the insurancel.
Is my COBRA running out soon? When would Medicare kick in? We received a bill for $1200 for my recent CT scan. Chest, abdomen and pelvis, over $700 each. All in one scan, but billed as three separate events. Jacki is working hard at her job and dealing with her end of this cancer scene. My job is dealing with these seemingly minor issues. My head, and most of anybody's heads view my symptoms and tasks as minor. But it all feels near insurmountable to me. Sure, I know, one bite at a time.
So, I get up in the morning, do our coffee, bring it and the paper to jacki, read the paper and work Soduko with Jacki. Good quality time with my wife. Then she is off to work leaving about 3 hours for me to get things done before taking the little white pill of cancer slowing poison. Then I get to be non functional for 5 hours, give or take, Can't walk straight, drive, climb stairs.. I can talk, but look out for whatever words might leave my lips. That leaves about 3 hours in the evening before I am just too tired to do much at all. Recovery meetings, be a sponsor, be social and then lounge with the energy left over before twilight zone lethargy. Everyday. Everyday. Everyday.
The price the pill extracts for breaking it's scheduled demands is increased dysfunction for the next day or 2. I will not read this over beore clicking on publish. here it is unexpurgated. My hunch is it comes off as complaining. Some days are just like that.
Bill
Saturday, March 13, 2010
2 deaths in 10 days
Two deaths, one suicide by gun and the other by drug overdose (suicide?)have happened close around my space in life in the past 10 days. The first was the son of a sponsee. The second was a guy, about 30, father of a baby and married to a recently clean again member of our 12 step program. I sponsored him 5 or 6 yrs ago. Both of these events hit me hard, the 2nd like a brick wall falling.
He died in the morning and last night his wife was there, at the Friday night meeting, overwhelmed with incomprehensible grief, but surrounded by many of us who love her. Feeling like a protective father (grand father?), welling up inside me were anger, sadness, fear and gratitude - near simultaneously. Anger at the disease of addiction and the addict who refused to be pulled away from its grip. Sad because another one of us was killed by this disease that claims it isn't even a disease. Scared because it could happen to me or those closest to me. And lastly, gratitude that it was not me.
This morning I allowed myself to acknowledge that I am also pissed at those two guys who frivolously discarded that which is so precious to me. How could the MF's throw away what cancer is stealing away from me and so many others? How could they devastate so many people in their lives? I am angry, and I don't even want to find empathy, compassion nor forgiveness. Not yet! Maybe someday.
In present day United States of America, yearly suicides outnumber homicides.
Maybe I have not told you yet that my trip to Bethesda for in depth evaluation and study, has been pushed back into late April or early May. I want it RIGHT NOW!
Did I mention that I am angry about 2 deaths in 10 days?
Bill
He died in the morning and last night his wife was there, at the Friday night meeting, overwhelmed with incomprehensible grief, but surrounded by many of us who love her. Feeling like a protective father (grand father?), welling up inside me were anger, sadness, fear and gratitude - near simultaneously. Anger at the disease of addiction and the addict who refused to be pulled away from its grip. Sad because another one of us was killed by this disease that claims it isn't even a disease. Scared because it could happen to me or those closest to me. And lastly, gratitude that it was not me.
This morning I allowed myself to acknowledge that I am also pissed at those two guys who frivolously discarded that which is so precious to me. How could the MF's throw away what cancer is stealing away from me and so many others? How could they devastate so many people in their lives? I am angry, and I don't even want to find empathy, compassion nor forgiveness. Not yet! Maybe someday.
In present day United States of America, yearly suicides outnumber homicides.
Maybe I have not told you yet that my trip to Bethesda for in depth evaluation and study, has been pushed back into late April or early May. I want it RIGHT NOW!
Did I mention that I am angry about 2 deaths in 10 days?
Bill
Saturday, March 6, 2010
How are you doing?
The question and its variants are still difficult to answer. 1st of all, thank you for asking. When you ask, I must ask myself a couple questions.
1.Do you really want to know and if so, how much info do you want.
2.Do I want to tell you and if so how much? I am aware of minutiae but it seems self indulgent to go there and so I don't.
I said above, 1st of all thank you for asking. However sometimes I am so wrapped up in my stuff that I don't even notice or remember to ask about you, little or small stuff. I think about it later and regret not asking about you and yours. Sometimes it seems almost inappropriate when you ask me about my routine regimen of cancer chemo.
Today I attended the marriage of one of my dearest friends, a man I respect, admire and love. I wanted to talk about the event, the man, the woman and the joy of watching and participating. They actively love each other and being there was an experience to treasure and an experience out of my self ... And then I'd be asked the question.
A few days ago, my friend's son committed suicide. In some small way I have been helpful. I have not asked, "How are you doing." "Talk to me" seems to help. I am so sorry you are having to go through this, was helpful once or twice. I'd like to know how you have gotten through today, is a pretty good support statement. Being there for someone so close, at least in my thoughts, prayers and heart to me means actively reaching out and listening for their pain, suffering, stunned hours. Closing my eyes on the phone helps me listen better.
The suicide and the marriage - in a way side by side in my collection of moments. Both huge for them and for me taking me out of my own head . . . away from cancer. My cancer pales. And then someone asks . . . the question. Perhaps Sometimes I may be doing you a favor by forgetting to ask "How are you doing?", allowing you to, for a few more moments be something other self centered. Instead thinking about someone else' pain or joy or big moment in their life. I think then there is room for compassion.
And, I am glad you asked.
Bill
1.Do you really want to know and if so, how much info do you want.
2.Do I want to tell you and if so how much? I am aware of minutiae but it seems self indulgent to go there and so I don't.
I said above, 1st of all thank you for asking. However sometimes I am so wrapped up in my stuff that I don't even notice or remember to ask about you, little or small stuff. I think about it later and regret not asking about you and yours. Sometimes it seems almost inappropriate when you ask me about my routine regimen of cancer chemo.
Today I attended the marriage of one of my dearest friends, a man I respect, admire and love. I wanted to talk about the event, the man, the woman and the joy of watching and participating. They actively love each other and being there was an experience to treasure and an experience out of my self ... And then I'd be asked the question.
A few days ago, my friend's son committed suicide. In some small way I have been helpful. I have not asked, "How are you doing." "Talk to me" seems to help. I am so sorry you are having to go through this, was helpful once or twice. I'd like to know how you have gotten through today, is a pretty good support statement. Being there for someone so close, at least in my thoughts, prayers and heart to me means actively reaching out and listening for their pain, suffering, stunned hours. Closing my eyes on the phone helps me listen better.
The suicide and the marriage - in a way side by side in my collection of moments. Both huge for them and for me taking me out of my own head . . . away from cancer. My cancer pales. And then someone asks . . . the question. Perhaps Sometimes I may be doing you a favor by forgetting to ask "How are you doing?", allowing you to, for a few more moments be something other self centered. Instead thinking about someone else' pain or joy or big moment in their life. I think then there is room for compassion.
And, I am glad you asked.
Bill
Thursday, March 4, 2010
Big deals
I am less sure than ever what defines a big deal. On a one to hundred scale, what in life is in the upper 25?
16 years in 12 step recovery has always told me being clean is numero uno because if I am clean then I have a chance to deal with everything else. One of my favorite t-shirts said "Don't sweat the small stuff" and the back said, "It's all small stuff." Maybe the thing about being clean is big, and the saying it's all small stuff, are helpful to put things into perspective. However, it seems to me that experiences and events that comprise a big deal are sprinkled and or dumped or result numerous times in each of our lives.
My daughter's birth was huge and subsequent growth stages have been big. My marriage to Jacki certainly dwarfs those previous. My day to day life with her is cumulatively big. My first kiss in 8th grade; starting 5 in Jr High basketball, and getting cut from the team 2 years later. All big deals to me.
My Dad's death 17 years ago was devastatingly large even though numbed by drugs. My Mom's near death bouts with lymphoma have been hugely tortuous. My sister's death for me was a deeply felt loss of an integral part of my being - she was special! Me getting clean indeed was and is a BIG deal. My cancer has so far had the most success at stealing my quality of life. Those are big to me.
Big to all of you has varying examples and events, some painful and some happy. Losing a home for your family is at least "BIG". You have just as many adjectives to communicate "big" as I do - big, large, huge, dwarfs, devastating, tortuous, peak, high point, low point - our language falls short of accuracy. Even our compassion can fall short as mine has done this very day. My friend's youngest son committed suicide yesterday. Gun to his head in his room.
That is a big deal.
I have a tendency to minimize or maximize or even dismiss your pain or happiness. "My case is worse or better than your case". I can judge and assess the worth and impact of your happiness or sadness, your joy or pain. How quickly I can dismiss or forget your hurt even as I defend or even wallow in my own right to be noticed, remembered and sympathized. My happiness is huge and you should agree even as I ignore yours. In recovery we call that self centered. At any given moment, chances are I am thinking about me and I am thinking my stuff is a bigger deal than yours.
In my better moments, I remember that I am "Bill Banana, One of the Bunch". We are all connected, what touches me touches you. At my best I notice life - yours and mine, the pain and joy, the hurt and comfort, the effort and accomplishment. Pain is pain and joy is joy and I do not to place a score by yours nor mine. Seems to me that when I notice and acknowledge and feel your life, seeing the similarities not the differences, feeling in me what life is to you, then I am acting love. Acting Love. Acting, not just saying. It is what I say I want. I need your example and help from my God to act that way and I seek more.
With love I see my friend, who lost her son today, and my big deals pale. I see you, I notice your life, and give you my love and my prayers.
Bill
16 years in 12 step recovery has always told me being clean is numero uno because if I am clean then I have a chance to deal with everything else. One of my favorite t-shirts said "Don't sweat the small stuff" and the back said, "It's all small stuff." Maybe the thing about being clean is big, and the saying it's all small stuff, are helpful to put things into perspective. However, it seems to me that experiences and events that comprise a big deal are sprinkled and or dumped or result numerous times in each of our lives.
My daughter's birth was huge and subsequent growth stages have been big. My marriage to Jacki certainly dwarfs those previous. My day to day life with her is cumulatively big. My first kiss in 8th grade; starting 5 in Jr High basketball, and getting cut from the team 2 years later. All big deals to me.
My Dad's death 17 years ago was devastatingly large even though numbed by drugs. My Mom's near death bouts with lymphoma have been hugely tortuous. My sister's death for me was a deeply felt loss of an integral part of my being - she was special! Me getting clean indeed was and is a BIG deal. My cancer has so far had the most success at stealing my quality of life. Those are big to me.
Big to all of you has varying examples and events, some painful and some happy. Losing a home for your family is at least "BIG". You have just as many adjectives to communicate "big" as I do - big, large, huge, dwarfs, devastating, tortuous, peak, high point, low point - our language falls short of accuracy. Even our compassion can fall short as mine has done this very day. My friend's youngest son committed suicide yesterday. Gun to his head in his room.
That is a big deal.
I have a tendency to minimize or maximize or even dismiss your pain or happiness. "My case is worse or better than your case". I can judge and assess the worth and impact of your happiness or sadness, your joy or pain. How quickly I can dismiss or forget your hurt even as I defend or even wallow in my own right to be noticed, remembered and sympathized. My happiness is huge and you should agree even as I ignore yours. In recovery we call that self centered. At any given moment, chances are I am thinking about me and I am thinking my stuff is a bigger deal than yours.
In my better moments, I remember that I am "Bill Banana, One of the Bunch". We are all connected, what touches me touches you. At my best I notice life - yours and mine, the pain and joy, the hurt and comfort, the effort and accomplishment. Pain is pain and joy is joy and I do not to place a score by yours nor mine. Seems to me that when I notice and acknowledge and feel your life, seeing the similarities not the differences, feeling in me what life is to you, then I am acting love. Acting Love. Acting, not just saying. It is what I say I want. I need your example and help from my God to act that way and I seek more.
With love I see my friend, who lost her son today, and my big deals pale. I see you, I notice your life, and give you my love and my prayers.
Bill
Monday, March 1, 2010
Long time, no write . . .
It has been just about a year since a specific dianosis was reached - metastasized papillary renal cell carcinoma, PRCC. I am not sure it is the pill form chemo drug Tarceva, or what, but the largest growth of any of my tumors is about one centimeter. I still feel nothing from the kidney tumor, but my breathing is impacted some by the nodules in my lungs. I started the medicine last March, but the centimeter of growth is measured frome the first CT scan January 2009.
The year marks a turning point for how I think about and feel about having this unusual and "incurable" form of cancer. What does my doctor really know? What does he not know? Early on, in some degree of shock, Jacki and I both took him at his word to be a a ntion wide expert in PRCC. Maybe he is. I know that he did not follow up on one drug trial I pointed him toward a year ago. In his practice, his patient times were adjusted from 20 min to 15 min. I know he did not follow up on a promised graph of tumor change over the months.
We have concluded that he may well be an "expert" in his field, but he still knows very little about inhibiting papillary cell growth. Nobody knows much about it. I want to know what they know AND what they do not know!!! I have finally defined my necessary role as Project Manager of my own treatment.
So, you helped me find a listserve of fellow PRCC patients. Through them I learned of a number of oncologists around the country who are or have worked with PRCC. Of those, much of the small amout of research on PRCC is done at the National Institute of Health. Their department of Cancer studies is deep into papillary study and trial interventions.
I must point out to our conservative party of NO! citizens that this place is an example of socialized healthcare. They are mostly government funded. No sanctified capitalistic pharmaceutical company has nor will invest much in research about PRCC nor most other unusual forms of cancer. No money in it.
I have cultivated an informed relationship with the head nurse of the department and I now have the cell number of one of the doctors. They want me to go to them in Bethesda, Maryland for a complete physical workup, perhaps to the genetic level. Then they will layout the drug trial pros and cons (additional side effects?) to Jacki and me to help us decide to be or not to be part of the trial. This stage 2drug trial uses my current drug, Tarceva, combined with another drug that kind of hits my cancer from a different angle. Sort of a double whammy approach that lets me be a bit more hopeful.
The doc I have spoken with said the combination looks very promising. In April I go to Bethesda for a few days of evaluation. They pay airfare and hotel but we pay Jacki's air. I am excited. If Jacki and I decide to do the trial it will require more trips to Bethesda.
That uplifting hopeful development the balance out with feeling angry a few times over the next few days. During a brisk long frustrated walk one night I had an overwhelming urge to throw my cell phone though a couple plate glass windows and then run like a scared rabbit. Then I realized my phone would be evidence inside the plate glass window -- uh ohh. I am typically better at stuffing anger than appropriately expressing this very human response to pain. Of course, stuffing anger squeezes out rage of coagulates inside into depression So vehemently talking about it and just thinking of throwing my phone or slashing my doctor's tires is progress for me and a bit more honest than "oh, I'm a little disappointed."
The anger was about yet another quality of life loss. We had to cancel a first time to Hawaii long planned trip. No biking, no skiing, no job, less freedom, spongy brain, cloudy thinking, memory loss. Cadillac problems all, but cancer is a thief and I am pissed off enough to fight.
Last night I became aware that in talking with others and particularly Jacki, I was focusing on some side benefits of going to Bethesda. For example I love the possibility of walking the monument filled Capitol Mall in nearby DC. I get choked up about getting to visit The Wall. Long ago I had an overwhelming experience visiting Philadelphia and the Liberty Bell and Independence Hall. I want it again, perhaps 10 fold in DC.
What I was not talking about is the underbelly of doing the trial. What if it does not work? How bad are the side effects? How much will I be away from friends and family? Even if I still die from PRCC, will I at least have helped the next guy? However, regardless of those fears, at least I will feel like I am doing something! Something please!!
Thanks for listening!
Bill
The year marks a turning point for how I think about and feel about having this unusual and "incurable" form of cancer. What does my doctor really know? What does he not know? Early on, in some degree of shock, Jacki and I both took him at his word to be a a ntion wide expert in PRCC. Maybe he is. I know that he did not follow up on one drug trial I pointed him toward a year ago. In his practice, his patient times were adjusted from 20 min to 15 min. I know he did not follow up on a promised graph of tumor change over the months.
We have concluded that he may well be an "expert" in his field, but he still knows very little about inhibiting papillary cell growth. Nobody knows much about it. I want to know what they know AND what they do not know!!! I have finally defined my necessary role as Project Manager of my own treatment.
So, you helped me find a listserve of fellow PRCC patients. Through them I learned of a number of oncologists around the country who are or have worked with PRCC. Of those, much of the small amout of research on PRCC is done at the National Institute of Health. Their department of Cancer studies is deep into papillary study and trial interventions.
I must point out to our conservative party of NO! citizens that this place is an example of socialized healthcare. They are mostly government funded. No sanctified capitalistic pharmaceutical company has nor will invest much in research about PRCC nor most other unusual forms of cancer. No money in it.
I have cultivated an informed relationship with the head nurse of the department and I now have the cell number of one of the doctors. They want me to go to them in Bethesda, Maryland for a complete physical workup, perhaps to the genetic level. Then they will layout the drug trial pros and cons (additional side effects?) to Jacki and me to help us decide to be or not to be part of the trial. This stage 2drug trial uses my current drug, Tarceva, combined with another drug that kind of hits my cancer from a different angle. Sort of a double whammy approach that lets me be a bit more hopeful.
The doc I have spoken with said the combination looks very promising. In April I go to Bethesda for a few days of evaluation. They pay airfare and hotel but we pay Jacki's air. I am excited. If Jacki and I decide to do the trial it will require more trips to Bethesda.
That uplifting hopeful development the balance out with feeling angry a few times over the next few days. During a brisk long frustrated walk one night I had an overwhelming urge to throw my cell phone though a couple plate glass windows and then run like a scared rabbit. Then I realized my phone would be evidence inside the plate glass window -- uh ohh. I am typically better at stuffing anger than appropriately expressing this very human response to pain. Of course, stuffing anger squeezes out rage of coagulates inside into depression So vehemently talking about it and just thinking of throwing my phone or slashing my doctor's tires is progress for me and a bit more honest than "oh, I'm a little disappointed."
The anger was about yet another quality of life loss. We had to cancel a first time to Hawaii long planned trip. No biking, no skiing, no job, less freedom, spongy brain, cloudy thinking, memory loss. Cadillac problems all, but cancer is a thief and I am pissed off enough to fight.
Last night I became aware that in talking with others and particularly Jacki, I was focusing on some side benefits of going to Bethesda. For example I love the possibility of walking the monument filled Capitol Mall in nearby DC. I get choked up about getting to visit The Wall. Long ago I had an overwhelming experience visiting Philadelphia and the Liberty Bell and Independence Hall. I want it again, perhaps 10 fold in DC.
What I was not talking about is the underbelly of doing the trial. What if it does not work? How bad are the side effects? How much will I be away from friends and family? Even if I still die from PRCC, will I at least have helped the next guy? However, regardless of those fears, at least I will feel like I am doing something! Something please!!
Thanks for listening!
Bill
Wednesday, January 20, 2010
Kansas holiday
The best part of traveling is traveling with Jacki. She is calm and relaxed, seldom tense. Very good with inlaws and outlaws - they tend to gather around her and I love to watch her with them. She travels well. Probably only 2 pairs of shoes. Most of all, there is that abiding sense of loving between us. Let's go!
Kansas is where my sibs and Mom live and where my nephews and nieces are within reach of getting there. Mom's sibs and some of their grown kids are there. We gather near Wichita every last weekend of the year. Seems like all of a sudden my nieces and nephews have kids who are no longer babies.
Best moments in Kansas? New Years Eve with about 40 people in the big party room and about a dozen of them were under 10. 4 generations of my family reminded me I have always had backup. We ate well, got along, had great fun and I beleive all of us welcome next year's repeat. I think I have written in the blog before about my increased perception that family is where it's at. ( yes I know ending a sentence with "at" is a gramatical no no, but we decided you can do it if you want to. ;-)
Both legs of our trip, Missouri and Kansas, were one of my favorite holiday gatherings ever, in part because I am now more aware and sensitive to the meaning of family.
And I also have family here in AZ. My favorite daughter (OK only) Kate is here. Oh God how I love that girl! Jacki's siblings and Dad are here, and all of us celebrated a couple times. Kate brought her best ever boy friend to dinner at Jacki's brother Dan's home. Even the oy friend wanted to stay past when he could have gracefully left.
Missouri, Kansas, Arizona - are you getting the idea how spoiled I am with so much family where love is a two way street. Not a drop of booze or other drugs the whole trip for any of these people. We know how to have fun on the natch.
For years I felt but little part of those bonds of family. I did not know how to allow myself to be part of and appreciate the variety of people in my family. Rather I stood outside, on the fringe and often rejected the whole picture. Unable to receive, stealing their right to give. It has taken 16 years of 12 step recovery to reach the point of cherishing the "both feet in the fray" I am so privileged to experience. From rejection to jumping in - it is me who changed. The roots were always available. Thank you!
Cancer? In the back of my mind, while feeling the joy of each step of this trip, was the recurring thought, "Is this my last?" Maybe it was, and that helped me participate and appreciate even more each little moment. However, the truth is that I probably will be there again and even likely that some one else will be missing before me. "I am not so special just because I think I know how I will die." A mentor here in Arizona laid that one on me a few months ago and it has helped keep me in perspective since. She is part of yet another family I get to be part of here in AZ. Maybe I can write about them tomorrow.
Bill
Kansas is where my sibs and Mom live and where my nephews and nieces are within reach of getting there. Mom's sibs and some of their grown kids are there. We gather near Wichita every last weekend of the year. Seems like all of a sudden my nieces and nephews have kids who are no longer babies.
Best moments in Kansas? New Years Eve with about 40 people in the big party room and about a dozen of them were under 10. 4 generations of my family reminded me I have always had backup. We ate well, got along, had great fun and I beleive all of us welcome next year's repeat. I think I have written in the blog before about my increased perception that family is where it's at. ( yes I know ending a sentence with "at" is a gramatical no no, but we decided you can do it if you want to. ;-)
Both legs of our trip, Missouri and Kansas, were one of my favorite holiday gatherings ever, in part because I am now more aware and sensitive to the meaning of family.
And I also have family here in AZ. My favorite daughter (OK only) Kate is here. Oh God how I love that girl! Jacki's siblings and Dad are here, and all of us celebrated a couple times. Kate brought her best ever boy friend to dinner at Jacki's brother Dan's home. Even the oy friend wanted to stay past when he could have gracefully left.
Missouri, Kansas, Arizona - are you getting the idea how spoiled I am with so much family where love is a two way street. Not a drop of booze or other drugs the whole trip for any of these people. We know how to have fun on the natch.
For years I felt but little part of those bonds of family. I did not know how to allow myself to be part of and appreciate the variety of people in my family. Rather I stood outside, on the fringe and often rejected the whole picture. Unable to receive, stealing their right to give. It has taken 16 years of 12 step recovery to reach the point of cherishing the "both feet in the fray" I am so privileged to experience. From rejection to jumping in - it is me who changed. The roots were always available. Thank you!
Cancer? In the back of my mind, while feeling the joy of each step of this trip, was the recurring thought, "Is this my last?" Maybe it was, and that helped me participate and appreciate even more each little moment. However, the truth is that I probably will be there again and even likely that some one else will be missing before me. "I am not so special just because I think I know how I will die." A mentor here in Arizona laid that one on me a few months ago and it has helped keep me in perspective since. She is part of yet another family I get to be part of here in AZ. Maybe I can write about them tomorrow.
Bill
Monday, January 18, 2010
In my face
It has been a month or more since last I wrote. That one was right after seeing the doctor after my last CTscan. I think I titled that blog something inoccous like "It's okay". I was lying. The radiology report said 1 (one) centimeter growth in the kidney tumor and similar growth in the largest lung nodules. One centimeter equals .4 inch. The kidney tumor was 9.7 cm a year ago, and now is 10.6ish.
Once again, the Doc was happy with the rate of growth. It appears the little white pill is working - slow growth. Then Jacki went to work and I went home. And hunkered down for two days. Looking back, I did not feel "good" like the Doc said, rather I felt somber. I really do have cancer and it is slowly growing.
Our Holidays were wonderful. First to Missouri to say a few days with Sharon and HF. So it was Jacki's sister and her husband, their grown daughter ( Jacki's niece) and her year old son (Jacki's grand nephew). As family we played games, talked, laughed and of course the babe was at center stage. Joy, peace and love was abundant.
Their home is a mile or so outside Jacki's small hometown, on a beautiful spot wth a pond. It snowed - real snow! I walked twice each day through the snow and around the pond. Each time I stopped about half way and breathed. Prayed. And breathed. The air there was so clean, fresh and brisk - almost sweet. I felt calm, almost devoid of thought and noticed the presence of God. I don't know exactly how to put it; I felt safe and loved, and I felt connected to all things created. That was perhaps the strongest spiritual experience of my life, and I was privileged to get it on each of several of those walks. No lightning bolt nor burning bush. Much more subtle yet deep and lengthy. It did not renewal so much as deepen my relationship with what is God.
Maybe I can get to the 2nd leg of our trip, Kansas, tomorrow. I think I feel better.
Bill
Once again, the Doc was happy with the rate of growth. It appears the little white pill is working - slow growth. Then Jacki went to work and I went home. And hunkered down for two days. Looking back, I did not feel "good" like the Doc said, rather I felt somber. I really do have cancer and it is slowly growing.
Our Holidays were wonderful. First to Missouri to say a few days with Sharon and HF. So it was Jacki's sister and her husband, their grown daughter ( Jacki's niece) and her year old son (Jacki's grand nephew). As family we played games, talked, laughed and of course the babe was at center stage. Joy, peace and love was abundant.
Their home is a mile or so outside Jacki's small hometown, on a beautiful spot wth a pond. It snowed - real snow! I walked twice each day through the snow and around the pond. Each time I stopped about half way and breathed. Prayed. And breathed. The air there was so clean, fresh and brisk - almost sweet. I felt calm, almost devoid of thought and noticed the presence of God. I don't know exactly how to put it; I felt safe and loved, and I felt connected to all things created. That was perhaps the strongest spiritual experience of my life, and I was privileged to get it on each of several of those walks. No lightning bolt nor burning bush. Much more subtle yet deep and lengthy. It did not renewal so much as deepen my relationship with what is God.
Maybe I can get to the 2nd leg of our trip, Kansas, tomorrow. I think I feel better.
Bill
Subscribe to:
Posts (Atom)
