PATIENT NOTE : There comes a point in during the struggle with terminal illness when you have had many treatments and dealt with all the questions, side-effects and other issues surrounding the experience, that each time a treatment fails to be effective in either arresting or eliminating the disease that you question whether or not it is all worth it, if indeed, the end point is terminal anyhow. In my case, I want to make it clear that my path has not been as difficult to deal with as others - I have maintained most of my health, and unless you look at my CT scans, you really don't 'see' a cancer patient - an issue which has produced its own set of challenges. If a cancer patient is fortunate (like I am) you don't face the battle alone - I have a wonderful wife, fantastic kids, and a growing network of friends who have all done their part to make the past year and a half manageable. However, keeping a clear head and positive outlook for what is yet to come is not easy.
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If you talk to my family members, you will soon discover that I am a fanatic for the show HOUSE. It is probably true that I have seen all 7 seasons worth of episodes probably 20 times. This happened for several reasons.
First, I like medical stuff, but, I just wish it didn't have to affect ME so much, damn it! In my head I have probably written a dozen episodes where I am a patient of House, and HE figures out what is wrong with me -without the pre-requisite four or five brushes with death that his patients suffer through on the show - they hook me up to the right meds, which make my disease disappear and I roll out the door in a wheel chair with my family... Alas, sigh, that is not the way it has been in the real world.
Second, during my various recoveries at home, and then the following life of unemployment as I go through treatment, I find myself sitting in my favorite chair, absorbed in the world of Princeton Plainsborough Hospital, where MY condition is not the issue, and I can 'help' - vicariously! - make other people better. I guess part of me wants to believe in miracles - than if I keep trying hard enough, if the doctors can keep going to the magical chemo-medical cabinet, whip up another concoction and find one that will finally get rid of the cancer and let me live out a normal life - to grow old and all that.... I keep hoping.
Third, though my doctors are no where near as crass, as a patient, I appreciate 'the-straight-story' - that I think is another reason I enjoy House... To me, he is one of the few characters who says what needs to be said. He is not afraid to tell someone they are an idiot, or a moron, or what ever other 'face-slap-generating-insult' that is necessary to make someone see what is really going on in front of them. If my doctor tells me, "Look, this is really bad." I can deal with that more than some mamby-pamby, 'politically-correct' version of the story that I am facing... Part of this issue that makes the continuation of the struggle is the fact that I realize that at SOMETIME, some doctor will tell me, one of two things either; "The cancer is gone, and we just need to monitor you.", or "Look, there is simply nothing more we can do for you."
Obviously the second option is the one that I fear the most and currently the one that occupies my mental state, making it hard to see the point in the struggle. To date I have had, 7 treatments of Oxaliplatin and Xeloda over 3 months, followed by 6 treatments of Irinotecan and Erbitux over 3 months, followed by my current regimen of 3 treatments of Irinotecan, 5-FU and Avastin over 2 months. Add into that 28 radiation treatments BEFORE all the chemo and at each stage, the treatments have shown no reduction in my tumors.
Twice so far I have been hospitalized due to side-affects that have gave me breathing problems, most recently last week I went into a coughing-spell that made it nearly impossible to breathe and ended up causing capillaries to burst in my lungs causing clots... so now add permanent blood-thinners to the daily pharmacopoeia of drugs I have to take, and you should be able to see why I wonder, at times, "Why the hell do I bother."
Seriously, as I have mentioned before 'ending-it-all' has seemed like a pretty good idea, but every time I find myself standing on that edge, looking into that psychological pit, I get pulled, yanked even, back into the struggle by people who make me realize that no matter when the end-game catches up with me, it is important to so many people that I keep on struggling. That I find some way to keep enough positive things in my head as possible, keep focused on the day-to-day, and try to find a spark within each day to keep on trying.
Without going into the details of my occasional depressive crying-fits, I need to say how important having people around you to help you hold on is. It has been absolutely vital for me. I cannot fathom doing this alone. For me my best friend, my rock, my anchor has been my wife. It may sound corny, but I don't care. Having her to hold me, listen to me blather on about how much my life sucks, and THEN she finds away to always say the right things, or nothing at all, to get me through the toughest times.
I couldn't do it without thinking of my kids either. Despite typical parental gripes they are great boys who continue to live their lives like I am ALWAYS going to be here. That is comforting at times - to know that my illness has not been so outwardly obvious that they are in a state of worry or fear for me all the time. Sometimes, it is frustrating too! When they become the uncooperative growing young men that make me want to taze them into compliance, I have been good at not being one of 'those' people who throw their illness at people to get them to do my bidding.... Not that I haven't thought of it, but that is not how I want to deal with things, nor is it the kind of 'patient' I want to become.
Then there are my friends, so many people have been so helpful and thoughtful that if I live to be 100 years old, I could not thank them enough - and I need to beat this disease, get healthy and be around to show them all in one way or another how much I appreciate all they have done for my family. As I have written before one never realizes how many people you have touched, in one way or another until your back is truly up against the wall.
Despite, seemingly contiuing setbacks with my treatments, I DO believe there WILL be a drug out there that will help either arrest or eliminate the tumors, or at least help me extend my time as long as possible. As I have also said before, I have a lot to live for and a lot yet to do... So I don't plan on going anywhere....
As I tell my doctors every time I go for treatment, "Here I am. What do you have for me today. Bring it on and let's beat this thing."
________________________________
If you talk to my family members, you will soon discover that I am a fanatic for the show HOUSE. It is probably true that I have seen all 7 seasons worth of episodes probably 20 times. This happened for several reasons.
First, I like medical stuff, but, I just wish it didn't have to affect ME so much, damn it! In my head I have probably written a dozen episodes where I am a patient of House, and HE figures out what is wrong with me -without the pre-requisite four or five brushes with death that his patients suffer through on the show - they hook me up to the right meds, which make my disease disappear and I roll out the door in a wheel chair with my family... Alas, sigh, that is not the way it has been in the real world.
Second, during my various recoveries at home, and then the following life of unemployment as I go through treatment, I find myself sitting in my favorite chair, absorbed in the world of Princeton Plainsborough Hospital, where MY condition is not the issue, and I can 'help' - vicariously! - make other people better. I guess part of me wants to believe in miracles - than if I keep trying hard enough, if the doctors can keep going to the magical chemo-medical cabinet, whip up another concoction and find one that will finally get rid of the cancer and let me live out a normal life - to grow old and all that.... I keep hoping.
Third, though my doctors are no where near as crass, as a patient, I appreciate 'the-straight-story' - that I think is another reason I enjoy House... To me, he is one of the few characters who says what needs to be said. He is not afraid to tell someone they are an idiot, or a moron, or what ever other 'face-slap-generating-insult' that is necessary to make someone see what is really going on in front of them. If my doctor tells me, "Look, this is really bad." I can deal with that more than some mamby-pamby, 'politically-correct' version of the story that I am facing... Part of this issue that makes the continuation of the struggle is the fact that I realize that at SOMETIME, some doctor will tell me, one of two things either; "The cancer is gone, and we just need to monitor you.", or "Look, there is simply nothing more we can do for you."
Obviously the second option is the one that I fear the most and currently the one that occupies my mental state, making it hard to see the point in the struggle. To date I have had, 7 treatments of Oxaliplatin and Xeloda over 3 months, followed by 6 treatments of Irinotecan and Erbitux over 3 months, followed by my current regimen of 3 treatments of Irinotecan, 5-FU and Avastin over 2 months. Add into that 28 radiation treatments BEFORE all the chemo and at each stage, the treatments have shown no reduction in my tumors.
Twice so far I have been hospitalized due to side-affects that have gave me breathing problems, most recently last week I went into a coughing-spell that made it nearly impossible to breathe and ended up causing capillaries to burst in my lungs causing clots... so now add permanent blood-thinners to the daily pharmacopoeia of drugs I have to take, and you should be able to see why I wonder, at times, "Why the hell do I bother."
Seriously, as I have mentioned before 'ending-it-all' has seemed like a pretty good idea, but every time I find myself standing on that edge, looking into that psychological pit, I get pulled, yanked even, back into the struggle by people who make me realize that no matter when the end-game catches up with me, it is important to so many people that I keep on struggling. That I find some way to keep enough positive things in my head as possible, keep focused on the day-to-day, and try to find a spark within each day to keep on trying.
Without going into the details of my occasional depressive crying-fits, I need to say how important having people around you to help you hold on is. It has been absolutely vital for me. I cannot fathom doing this alone. For me my best friend, my rock, my anchor has been my wife. It may sound corny, but I don't care. Having her to hold me, listen to me blather on about how much my life sucks, and THEN she finds away to always say the right things, or nothing at all, to get me through the toughest times.
I couldn't do it without thinking of my kids either. Despite typical parental gripes they are great boys who continue to live their lives like I am ALWAYS going to be here. That is comforting at times - to know that my illness has not been so outwardly obvious that they are in a state of worry or fear for me all the time. Sometimes, it is frustrating too! When they become the uncooperative growing young men that make me want to taze them into compliance, I have been good at not being one of 'those' people who throw their illness at people to get them to do my bidding.... Not that I haven't thought of it, but that is not how I want to deal with things, nor is it the kind of 'patient' I want to become.
Then there are my friends, so many people have been so helpful and thoughtful that if I live to be 100 years old, I could not thank them enough - and I need to beat this disease, get healthy and be around to show them all in one way or another how much I appreciate all they have done for my family. As I have written before one never realizes how many people you have touched, in one way or another until your back is truly up against the wall.
Despite, seemingly contiuing setbacks with my treatments, I DO believe there WILL be a drug out there that will help either arrest or eliminate the tumors, or at least help me extend my time as long as possible. As I have also said before, I have a lot to live for and a lot yet to do... So I don't plan on going anywhere....
As I tell my doctors every time I go for treatment, "Here I am. What do you have for me today. Bring it on and let's beat this thing."
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