PATIENT NOTE: It has been a little over a month since my last post (a wonderful one from my wife on her perspective in the patient/support process) and a lot can happen - good and bad - and as MY luck would have it, it has been bad. A few short weeks ago my latest CT scan revealed that not only had the chemotherapy protocol I was on for the last 3 months not REDUCED or eliminated my tumors, they have, unfortunately grown - seemingly happily - and increased in size and number. With this latest news came a grim reminder that, left untreated, my time will be relatively short as a survivor. So, on we go with a new plan for new treatment to hopefully beat this thing.
____________
As we all know - and become increasingly aware - we have 'BORN ON' dates - birthdays, and eventually we have an 'EXPIRATION DATE' - the day we die which hopefully comes later rather than sooner. However in the world of those with terminal illness, we often time get a projected date handed to us by our doctors based on the success or failure of the many treatments we undergo, I, apparently am no different.
I have recently completed my second round of chemotherapy for now metastatic colon cancer that has travelled to my liver and lung. After treatment was completed, a CT scan was done and it was revealed that this combination of the drugs Erbitux and Iriniotecan were completely ineffective in eliminating or halting the growth of the tumors. All I could think when the doctor gave me the news (my wife was there with me) was, "Shit! Really? All this for nothing?". Instead, I looked at my doctor for answers and said, "O.K., what's next?" It was at this point that he started laying out the full picture of just how bad things were.
I always make the doctor show me the scans and explain exactly what is going on in my body. In this case, it just got worse with each passing sentence. I will summarize, since I don't think I can even type all the details, but here it goes. I have about a 20% increase in the size of my liver tumors - now involving nearly 50% of my liver volume (bad, but manageable evidently). The tumor that WAS small in my lung is now bigger, and (here is the kicker) I now have new 'growths' showing up in my abdomen (where my colon USED to be).
The next words from the doctor were, "If we do no further treatment, and take into consideration the growth rate we see here, you will have about six to eight months before the tumors start affecting other systems in your body, like liver function and blood circulation, if that happens, the decline would be rapid, you'd have maybe a year at best." - go ahead Doc, lay it on me!
I appreciate a doctor who is honest and puts things on the table. He followed this sucker punch with this, "But, we are NOT going to do NOTHING. We are going to fight." What followed was a discussion of other medical options - surgery is out due to the spread of the tumors, but there are a whole host of other chemotherapy treatments -some standardized, some more experimental, that he wanted to investigate as we move ahead to beat this cancer.
As we walked out of the office, I looked at my wife and said, "No way in HELL am I NOT going to last only six months. I simply don't believe it." We drove home, mostly in silence and then spent the next couple of days dealing with the new, disappointing news together and separately. Yes, there were lots of tears, hugs, fear and worry. Too many things go through my mind after being given an EXPIRATION DATE. The big kicker to me is that I don't even FEEL sick!!! Not that I WANT to, but when someone stamps your mental forehead with a SPOILS ON date, it tends to freak you out!
What to do now? Panic? Run screaming like a crazy person? Sell everything and go on a cruise? Well, I DID consider all of those things, but realized that for a host of reasons, none of them were viable options for me and my family, so, what to do? What would anyone in this age do? I hit the internet running.
Fire up GOOGLE, search my condition, search clinical trials, search new and experimental drugs, search alternative therapies and treatments. Type, print, read, read, read. Highlight articles, make a list of questions. Read the studies (and panic a bit) since most everything I found looked like my best hope was 18 months to two years, no matter WHAT treatment I underwent. Better than six months, but DAMN!, not what I was hoping for!
The next fun (?) part of this process is the phone calls that are required to family and friends updating them on the situation, trying to avert THEIR PANIC when ever possible. Trying to assure THEM that I am not going to die tomorrow, nor am I going to sit in my chair and give up. I intend to FIGHT with my last breath. This process was NOT easy, parents panic, we have to figure out what and how to tell the kids that I MAY, in fact NOT be around to see graduations, weddings, grand children and the like, let alone grow old and retire in the Bahamas. To put it bluntly, the past couple of weeks have SUCKED!
In between phone calls and internet searches, I put together a stack of articles and a list of questions for the next meeting with my doctor. I set an appointment and off I went.
This appointment (I now think they purposely give patients time to process things, which was nice) went a bit better - I was more focused on hope than paralyzed by fear, and could talk rationally with the doctors and nurses about a new plan of attack.
So, here is the new deal. I am in line for a near-market-ready drug called Regorfanetib to be obtained from either Columbus, or Cleveland. According to my doctor, this is SUPPOSED to be more effective than anything on the market (HOPE!) and show to have very few side effects (GOOD!) and administered in pill form (YEAH!). As potential back-up plans, we went through the stack of clinical trials I had pulled off the web, evaluated which ones I did and didn't qualify for and now we have a plan that is several levels deep, and staged based on success or failure of each medicine.
One good mental light that has appeared is a group of like-conditioned-patients I have been put in touch with through the national Colon Cancer Alliance. In the last week I have had some very encouraging talks with survivors of my same condition that are at 4, 6 and even 9 years of survival! At this moment these seem like eternities - given what I have been told and discovered.
Armed with this NEW information, I have decided to not start obsessing over a potential sooner-rather-than-later EXPIRATION DATE, and to focus on the new treatment, hope and pray we find some sort of combination that will halt or better yet eliminate the cancer now running around in my body. I will also continue to enjoy my family, friends, art, music, food and everything else I love, one day and one drug at a time...
If I am BREATHING, I am FIGHTING!!!!
____________
As we all know - and become increasingly aware - we have 'BORN ON' dates - birthdays, and eventually we have an 'EXPIRATION DATE' - the day we die which hopefully comes later rather than sooner. However in the world of those with terminal illness, we often time get a projected date handed to us by our doctors based on the success or failure of the many treatments we undergo, I, apparently am no different.
I have recently completed my second round of chemotherapy for now metastatic colon cancer that has travelled to my liver and lung. After treatment was completed, a CT scan was done and it was revealed that this combination of the drugs Erbitux and Iriniotecan were completely ineffective in eliminating or halting the growth of the tumors. All I could think when the doctor gave me the news (my wife was there with me) was, "Shit! Really? All this for nothing?". Instead, I looked at my doctor for answers and said, "O.K., what's next?" It was at this point that he started laying out the full picture of just how bad things were.
I always make the doctor show me the scans and explain exactly what is going on in my body. In this case, it just got worse with each passing sentence. I will summarize, since I don't think I can even type all the details, but here it goes. I have about a 20% increase in the size of my liver tumors - now involving nearly 50% of my liver volume (bad, but manageable evidently). The tumor that WAS small in my lung is now bigger, and (here is the kicker) I now have new 'growths' showing up in my abdomen (where my colon USED to be).
The next words from the doctor were, "If we do no further treatment, and take into consideration the growth rate we see here, you will have about six to eight months before the tumors start affecting other systems in your body, like liver function and blood circulation, if that happens, the decline would be rapid, you'd have maybe a year at best." - go ahead Doc, lay it on me!
I appreciate a doctor who is honest and puts things on the table. He followed this sucker punch with this, "But, we are NOT going to do NOTHING. We are going to fight." What followed was a discussion of other medical options - surgery is out due to the spread of the tumors, but there are a whole host of other chemotherapy treatments -some standardized, some more experimental, that he wanted to investigate as we move ahead to beat this cancer.
As we walked out of the office, I looked at my wife and said, "No way in HELL am I NOT going to last only six months. I simply don't believe it." We drove home, mostly in silence and then spent the next couple of days dealing with the new, disappointing news together and separately. Yes, there were lots of tears, hugs, fear and worry. Too many things go through my mind after being given an EXPIRATION DATE. The big kicker to me is that I don't even FEEL sick!!! Not that I WANT to, but when someone stamps your mental forehead with a SPOILS ON date, it tends to freak you out!
What to do now? Panic? Run screaming like a crazy person? Sell everything and go on a cruise? Well, I DID consider all of those things, but realized that for a host of reasons, none of them were viable options for me and my family, so, what to do? What would anyone in this age do? I hit the internet running.
Fire up GOOGLE, search my condition, search clinical trials, search new and experimental drugs, search alternative therapies and treatments. Type, print, read, read, read. Highlight articles, make a list of questions. Read the studies (and panic a bit) since most everything I found looked like my best hope was 18 months to two years, no matter WHAT treatment I underwent. Better than six months, but DAMN!, not what I was hoping for!
The next fun (?) part of this process is the phone calls that are required to family and friends updating them on the situation, trying to avert THEIR PANIC when ever possible. Trying to assure THEM that I am not going to die tomorrow, nor am I going to sit in my chair and give up. I intend to FIGHT with my last breath. This process was NOT easy, parents panic, we have to figure out what and how to tell the kids that I MAY, in fact NOT be around to see graduations, weddings, grand children and the like, let alone grow old and retire in the Bahamas. To put it bluntly, the past couple of weeks have SUCKED!
In between phone calls and internet searches, I put together a stack of articles and a list of questions for the next meeting with my doctor. I set an appointment and off I went.
This appointment (I now think they purposely give patients time to process things, which was nice) went a bit better - I was more focused on hope than paralyzed by fear, and could talk rationally with the doctors and nurses about a new plan of attack.
So, here is the new deal. I am in line for a near-market-ready drug called Regorfanetib to be obtained from either Columbus, or Cleveland. According to my doctor, this is SUPPOSED to be more effective than anything on the market (HOPE!) and show to have very few side effects (GOOD!) and administered in pill form (YEAH!). As potential back-up plans, we went through the stack of clinical trials I had pulled off the web, evaluated which ones I did and didn't qualify for and now we have a plan that is several levels deep, and staged based on success or failure of each medicine.
One good mental light that has appeared is a group of like-conditioned-patients I have been put in touch with through the national Colon Cancer Alliance. In the last week I have had some very encouraging talks with survivors of my same condition that are at 4, 6 and even 9 years of survival! At this moment these seem like eternities - given what I have been told and discovered.
Armed with this NEW information, I have decided to not start obsessing over a potential sooner-rather-than-later EXPIRATION DATE, and to focus on the new treatment, hope and pray we find some sort of combination that will halt or better yet eliminate the cancer now running around in my body. I will also continue to enjoy my family, friends, art, music, food and everything else I love, one day and one drug at a time...
If I am BREATHING, I am FIGHTING!!!!
