PATIENT NOTE: I would like to summarize before I add to this blog. The timeline of the experience gets foggy and needs some review.
OCTOBER 2010 - Hired by Asset Protection Corporation - fairly interesting job.
NOVEMBER 2010 - Recurrent bleeding systems leads me to the hospital for tests.
DECEMBER 2010 - A diagnosis of advanced colon cancer with no lymph node involvement.
MARCH 2011 - Surgery to remove the cancerous sections of the colon ends with complete proctocolectomy, leaving me with a permanent ileostomy. Two week hospital recovery.
MARCH - MAY 2011 - In home recovery. Long, arduous, boring, nervewracking and life changing.
MAY 2011 - Return to work at APC, enjoy a full summer and fall of work, learning the job, seems like a good fit for the future.
JUNE 2011 - Begin post-surgical radiation and first round of chemotherapy to treat for cancer that still may be around.
SEPTEMBER 2011 - surgical follow up and CT scan evaluation in cleveland reveals that the cancer has metastasized to my liver and one lung - surgical options are discussed, as well as a shift to a new second line chemotherapy protocol.
OCTOBER 2011 - laid off from APC - reason given was 'lack of work', but I suspect medical costs for my treatments may have been an issue
OCTOBER - DECEMBER 2011 - Now unemployed, and having been advised to begin applying for permanent disability, continue the second round of chemotherapy.
DECEMBER 2011 - CT scan reveals more tumor development and a surgical biopsy reveals multiple tumors in the liver, that are sampled for genetic testing.
DECEMBER 2011 - genetic testing of tumors shows I would be a 'good match' for a monoclonal antibody drug called erbitux, so I begin that a few weeks after surgical recovery.
JANUARY - APRIL 2012 - continue treatment, continue to be unemployed and unemployable.
APRIL 2012 - New CT scan reveals the past three months of treatment have not been effective, and tumors have grown in size and location. After consultation with doctors a new plan is formulated, new chemotherapy and exploration of clinical trial options. At this point I was given a prognosis of not much more than two years until the tumors cause terminal problems.
JUNE 2012 - Began new protocol of 4 drug cocktail to see if it will be more effective in reducing or halting tumor growth.
So, now you are up to date. I just completed the first of 4 bi-weekly cycles of the new protocol and just hope that this time it works....
_______________________________________________________
When I consider the past three years, and what I have been through I have begun to better understand what has been happening and have a bit of a grasp of what it all may mean in the big picture. Look, the basics are that none of us are immortal, we will all have an ending, there is no escaping that. I have come to grips with that in general, and have even begun to understand that for me, it may be sooner than I would hope, but that, too is out of my hands, other than doing my best to stay healthy as the medical gurus pump their chemicals into my body and try to help do the battle from within.
Before the return of my cancer, I had to deal with the vacuous hole caused in my life by the loss of a job that i really loved. I wrote considerably about that experience in my unemployment blog, so I won't rehash that here, except to say that the loss of a job has become part of the new normal that I have been discovering as I now move through the experience of cancer, which has added more levels to this new existence.
A month or so ago, I ran out of unemployment, which fortunately dovetailed into disability payments. Let me say that, while this money is welcome and desperately needed for our household budget, it is by no means an adequate income for me to feel like I am a contributing member of our economic situation. Like many of our generation, we don't have deep savings, stocks, bonds, investments, etc. to fall back on, we simply try to get by day to day on our incomes. It is not easy, and is not getting any easier as time goes on.
So what is this 'new-normal'? What is this existence that I live now, and how does it affect me as I move ahead? First, I have pretty much lost most sense of time - as in days of the week. I know that it is a 'weekend day' when my wife is home and gets to sleep in. I USED to know it was a week day when my youngest would get up early and go to school. Now that summer is here things are really confusing.
My wife still gets up and goes to work. both boys are home for the summer (neither gets up early) so I REALLY have very little household indicator as to what fricking day it is. I DO have one clue - each Thursday I must give a weekly blood sample to keep monitoring my progress with treatment, but other than that general daily reckoning has been knocked off kilter.
As strange as it sounds I look FORWARD to cycles of Chemo because their two or three week schedules at least ground me back to the real world calendar a bit. However, I must admit that for me, another challenge is tiredness caused by the chemo treatments sometimes has me sleeping at odd hours, sometimes not at all during the night, then I nap during the day further throwing off my clock.
Now that you have a sense of how this combination of events has thrown every thing off, what has been the result. Honestly, I must admit that it is exhausting even to worry about much anymore. I tend to let things either go un-done around the house - worried that I might not feel up to finishing a big project, or I ignore and avoid important things that need to be attended to because I get depressed and think about the short window of time I may have left, and think 'why bother'. This extends from basic house work, adult responsibilities like making final arrangements, to whether or not it is worth even applying for jobs anymore, and why I bother to even THINK of pursuing a 'new-career' as a working artist - am I CRAZY?
As I mentioned once before, this existence I live is one of tumultuous limbo, where I have very little grasp on much of anything, and often see very little point in even making the efforts needed to get up and face the day. Not ALL days feel like this, but many do, I know it is partially due to depression and am on meds for that, but part of me STILL feels like it is not worth it, the world will go on, it will be a bit messy when my time comes, but people will go on without me.
While this may seem a bit depressing, I don't plan on giving up, but I do find it difficult to deal with this 'New Normal'. I need to find a way to put my self on some kind of schedule that can take all these new parameters and build some kind of structure to my daily existence so that I do not just continue to float, feeling helpless, and worthlessly from day to day, until I become too sick to do anything anyhow - I want to stave that day off obviously as long as possible, but it's just that at this time it seems so pointless to continue trying to redefine myself, yet again, to regain some footing in this new normal that I face.
OCTOBER 2010 - Hired by Asset Protection Corporation - fairly interesting job.
NOVEMBER 2010 - Recurrent bleeding systems leads me to the hospital for tests.
DECEMBER 2010 - A diagnosis of advanced colon cancer with no lymph node involvement.
MARCH 2011 - Surgery to remove the cancerous sections of the colon ends with complete proctocolectomy, leaving me with a permanent ileostomy. Two week hospital recovery.
MARCH - MAY 2011 - In home recovery. Long, arduous, boring, nervewracking and life changing.
MAY 2011 - Return to work at APC, enjoy a full summer and fall of work, learning the job, seems like a good fit for the future.
JUNE 2011 - Begin post-surgical radiation and first round of chemotherapy to treat for cancer that still may be around.
SEPTEMBER 2011 - surgical follow up and CT scan evaluation in cleveland reveals that the cancer has metastasized to my liver and one lung - surgical options are discussed, as well as a shift to a new second line chemotherapy protocol.
OCTOBER 2011 - laid off from APC - reason given was 'lack of work', but I suspect medical costs for my treatments may have been an issue
OCTOBER - DECEMBER 2011 - Now unemployed, and having been advised to begin applying for permanent disability, continue the second round of chemotherapy.
DECEMBER 2011 - CT scan reveals more tumor development and a surgical biopsy reveals multiple tumors in the liver, that are sampled for genetic testing.
DECEMBER 2011 - genetic testing of tumors shows I would be a 'good match' for a monoclonal antibody drug called erbitux, so I begin that a few weeks after surgical recovery.
JANUARY - APRIL 2012 - continue treatment, continue to be unemployed and unemployable.
APRIL 2012 - New CT scan reveals the past three months of treatment have not been effective, and tumors have grown in size and location. After consultation with doctors a new plan is formulated, new chemotherapy and exploration of clinical trial options. At this point I was given a prognosis of not much more than two years until the tumors cause terminal problems.
JUNE 2012 - Began new protocol of 4 drug cocktail to see if it will be more effective in reducing or halting tumor growth.
So, now you are up to date. I just completed the first of 4 bi-weekly cycles of the new protocol and just hope that this time it works....
_______________________________________________________
When I consider the past three years, and what I have been through I have begun to better understand what has been happening and have a bit of a grasp of what it all may mean in the big picture. Look, the basics are that none of us are immortal, we will all have an ending, there is no escaping that. I have come to grips with that in general, and have even begun to understand that for me, it may be sooner than I would hope, but that, too is out of my hands, other than doing my best to stay healthy as the medical gurus pump their chemicals into my body and try to help do the battle from within.
Before the return of my cancer, I had to deal with the vacuous hole caused in my life by the loss of a job that i really loved. I wrote considerably about that experience in my unemployment blog, so I won't rehash that here, except to say that the loss of a job has become part of the new normal that I have been discovering as I now move through the experience of cancer, which has added more levels to this new existence.
A month or so ago, I ran out of unemployment, which fortunately dovetailed into disability payments. Let me say that, while this money is welcome and desperately needed for our household budget, it is by no means an adequate income for me to feel like I am a contributing member of our economic situation. Like many of our generation, we don't have deep savings, stocks, bonds, investments, etc. to fall back on, we simply try to get by day to day on our incomes. It is not easy, and is not getting any easier as time goes on.
So what is this 'new-normal'? What is this existence that I live now, and how does it affect me as I move ahead? First, I have pretty much lost most sense of time - as in days of the week. I know that it is a 'weekend day' when my wife is home and gets to sleep in. I USED to know it was a week day when my youngest would get up early and go to school. Now that summer is here things are really confusing.
My wife still gets up and goes to work. both boys are home for the summer (neither gets up early) so I REALLY have very little household indicator as to what fricking day it is. I DO have one clue - each Thursday I must give a weekly blood sample to keep monitoring my progress with treatment, but other than that general daily reckoning has been knocked off kilter.
As strange as it sounds I look FORWARD to cycles of Chemo because their two or three week schedules at least ground me back to the real world calendar a bit. However, I must admit that for me, another challenge is tiredness caused by the chemo treatments sometimes has me sleeping at odd hours, sometimes not at all during the night, then I nap during the day further throwing off my clock.
Now that you have a sense of how this combination of events has thrown every thing off, what has been the result. Honestly, I must admit that it is exhausting even to worry about much anymore. I tend to let things either go un-done around the house - worried that I might not feel up to finishing a big project, or I ignore and avoid important things that need to be attended to because I get depressed and think about the short window of time I may have left, and think 'why bother'. This extends from basic house work, adult responsibilities like making final arrangements, to whether or not it is worth even applying for jobs anymore, and why I bother to even THINK of pursuing a 'new-career' as a working artist - am I CRAZY?
As I mentioned once before, this existence I live is one of tumultuous limbo, where I have very little grasp on much of anything, and often see very little point in even making the efforts needed to get up and face the day. Not ALL days feel like this, but many do, I know it is partially due to depression and am on meds for that, but part of me STILL feels like it is not worth it, the world will go on, it will be a bit messy when my time comes, but people will go on without me.
While this may seem a bit depressing, I don't plan on giving up, but I do find it difficult to deal with this 'New Normal'. I need to find a way to put my self on some kind of schedule that can take all these new parameters and build some kind of structure to my daily existence so that I do not just continue to float, feeling helpless, and worthlessly from day to day, until I become too sick to do anything anyhow - I want to stave that day off obviously as long as possible, but it's just that at this time it seems so pointless to continue trying to redefine myself, yet again, to regain some footing in this new normal that I face.
