Dear Friends,
My hands are a bit weak, perhaps simply from lack of use in the hospital. So I'll l have to keep this short. Forgive my typos. I'm also extremely tired. This week, I am glad I made it through. I wasn't sure that I would. It is truly by God's grace. How can we take forgranted a nasty fight against pnumonea and cancer, while coming out a week later not much worse for it anything less than grace! Please pray for continued recovery as I'm not there yet. I also continue to be tired almost continuously. Ick! It's very hard to get things completed, much less started. Next time I will write about clinlical trials as promised if I have the strength. For now, feel free to visit caringbridge.org for mor detailed info that my mother faithfully posts.
Adam
Saturday, November 19, 2011
Monday, October 31, 2011
Clinical Trials
Before I dig in, I want to assure you all that you can still comment anonymously, even though it may take two or three clicks to make it go through. Save your comment to a Word doc and try again if it doesn't work the first time. Sorry to those of you having trouble.
Clinical trials lie before us. They are our "last hope", our "final option". It may be that desert mirrage that the thirsty cartoon caracter famously dives into, thinking it's an inviting pool of water. It may be no more useful that my former habits of taking 20 vitamin and mineral supplments per day. It may be as useful as sugar tablets. Clinical trials are the Great Unknown, the Final Frontier of colon cancer. We don't know what lies ahead, we don't know where we're going, and we don't know how to get there. We do know it will be an expensive journey that will require sacrifice, great effort, and much preparation.
I have gone through much preparation already. As I've told you, there were a multitute of tests regarding my general health. The doctors want to make sure I'm able to finish the journey before I start it. This seems very wise to me. Who am I to determine whether I'm able to make it to the end. Before I get started, I'll be put through many many more tests, undergo numberous sessions of questioning. Most importantly to me, I'll learn the risks and potential rewards of undergoing this particular study. I'm sure this will be overwhelming to me. Being driven in will be the very real possibility of death by drugs. These test subjects really are just a few steps up from laboratory rats. While I'm hopeful for healing for myself, I am hopeful that I will be able to make valuable contributions to medical science. I am hopeful that by puting myself through these tests, that cures may come closer to reality for those suffering from my same condition.
Beyond what I've written, I don't really have any certainty. I have no trial lined up to get into. Just hoping and trusting that God always does what is right. I'm going into this with some excitement, some fears, uncertainty, hope. Maybe like a job interview for which I don't know the qualifications. Except potential employees don't prob, prod, stab, and sample.
I haven't even made mention as to where I'm going yet. My first venture is this week to Karmanos Cancer Institute in Detroit. Several of you already expressed surprise that I've never been to Detroit before. Well, here it is again. There, I'll be evaluated for whatever Phase I trials they have that may be useful to me. I'm going there blind. My second trek is to metro Washington DC to the National Institute of Health. They have what appears a very interesting Phase II study that my doctor and I are hoping to get me qualified for. These are Very Small Studies. Only 38 participants are allowed. What are my chances? And what's there to do now? I'd say, eat chocolate and play on my new Kindle which will entertain me for countless hours in upcoming road/air trips.
Clinical trials lie before us. They are our "last hope", our "final option". It may be that desert mirrage that the thirsty cartoon caracter famously dives into, thinking it's an inviting pool of water. It may be no more useful that my former habits of taking 20 vitamin and mineral supplments per day. It may be as useful as sugar tablets. Clinical trials are the Great Unknown, the Final Frontier of colon cancer. We don't know what lies ahead, we don't know where we're going, and we don't know how to get there. We do know it will be an expensive journey that will require sacrifice, great effort, and much preparation.
I have gone through much preparation already. As I've told you, there were a multitute of tests regarding my general health. The doctors want to make sure I'm able to finish the journey before I start it. This seems very wise to me. Who am I to determine whether I'm able to make it to the end. Before I get started, I'll be put through many many more tests, undergo numberous sessions of questioning. Most importantly to me, I'll learn the risks and potential rewards of undergoing this particular study. I'm sure this will be overwhelming to me. Being driven in will be the very real possibility of death by drugs. These test subjects really are just a few steps up from laboratory rats. While I'm hopeful for healing for myself, I am hopeful that I will be able to make valuable contributions to medical science. I am hopeful that by puting myself through these tests, that cures may come closer to reality for those suffering from my same condition.
Beyond what I've written, I don't really have any certainty. I have no trial lined up to get into. Just hoping and trusting that God always does what is right. I'm going into this with some excitement, some fears, uncertainty, hope. Maybe like a job interview for which I don't know the qualifications. Except potential employees don't prob, prod, stab, and sample.
I haven't even made mention as to where I'm going yet. My first venture is this week to Karmanos Cancer Institute in Detroit. Several of you already expressed surprise that I've never been to Detroit before. Well, here it is again. There, I'll be evaluated for whatever Phase I trials they have that may be useful to me. I'm going there blind. My second trek is to metro Washington DC to the National Institute of Health. They have what appears a very interesting Phase II study that my doctor and I are hoping to get me qualified for. These are Very Small Studies. Only 38 participants are allowed. What are my chances? And what's there to do now? I'd say, eat chocolate and play on my new Kindle which will entertain me for countless hours in upcoming road/air trips.
Sunday, October 23, 2011
My latest condition update and thoughts on it
Some of you may have heard already that the news is not so good. On Thursday, I received the hard news that my latest and last available round of chemotherapy is not working and the my cancer is growing and spreading. The speed of which I do not know. As most of you already know, I am looking for clinical trials as a "last ditch" effort. I will try to be clear and concise about my thoughts on this. For me, it is not a difficult topic, but I don't want to sound as if I understand or know it all.
What does this disease progress mean? The first thing it means to me is the potential of pain. Up to this point, I have had no lasting pain. I am beginning to feel that I have this nasty disease growing within my body. I feel it a little bit when I sleep, and it is causing some swallowing difficulty. The physical reality of the disease is dawning on me. It also keeps me in constant view of the bed -- sleeping always sounds like a wonderful relief to me. I'll never discourage the suggestion of sleep. But would I ever have? A nap has always sounded like a good idea. But it also means that I miss out on a lot of things that otherwise would sound good to me. Also, I don't think that I'd eat if food weren't given to me. Perhaps I'd get hungry after a while, but I'd certainly be in a nearly skeletal state by then
How bout the other pressing issues? There is the reality of death. I hesitate to mention this on a blog. But as I say, people have asked me to be frank. I will be brief on this. I believe that God has already established the length of my days long before I came into existence. There is nothing I can do to add a day to my life. I think more than anything, I should be thankful to know that my life may be nearing an end. I have a chance to get my affairs in order. God certainly could have ordained that I expire in a car crash, or by heart failure, or some quick, painful illness. He has not. Shouldn't I be grateful for this mercy? A minister I was listening to today said this in a sermon on Job: God will never take away anything unless he intends to replace it with something better. The Apostle Paul also said such a thing, To live is Christ, and to die is gain.
Well, there are other things. I'll try to keep this little side serious series running in parallel with the regular infrequent postings.
What does this disease progress mean? The first thing it means to me is the potential of pain. Up to this point, I have had no lasting pain. I am beginning to feel that I have this nasty disease growing within my body. I feel it a little bit when I sleep, and it is causing some swallowing difficulty. The physical reality of the disease is dawning on me. It also keeps me in constant view of the bed -- sleeping always sounds like a wonderful relief to me. I'll never discourage the suggestion of sleep. But would I ever have? A nap has always sounded like a good idea. But it also means that I miss out on a lot of things that otherwise would sound good to me. Also, I don't think that I'd eat if food weren't given to me. Perhaps I'd get hungry after a while, but I'd certainly be in a nearly skeletal state by then
How bout the other pressing issues? There is the reality of death. I hesitate to mention this on a blog. But as I say, people have asked me to be frank. I will be brief on this. I believe that God has already established the length of my days long before I came into existence. There is nothing I can do to add a day to my life. I think more than anything, I should be thankful to know that my life may be nearing an end. I have a chance to get my affairs in order. God certainly could have ordained that I expire in a car crash, or by heart failure, or some quick, painful illness. He has not. Shouldn't I be grateful for this mercy? A minister I was listening to today said this in a sermon on Job: God will never take away anything unless he intends to replace it with something better. The Apostle Paul also said such a thing, To live is Christ, and to die is gain.
Well, there are other things. I'll try to keep this little side serious series running in parallel with the regular infrequent postings.
Wednesday, October 12, 2011
Dear Blood Clot,
Your payment for room and board in my left thigh is more that a week overdue. Your residence of over three weeks is now no longer welcome. Reviewing your renter history, your landlord has found that you disturb the whole rental unit: you do not allow others to comfortably exercise on the premises without your interferenece; you often cause physical pain to those living in nearby units; and early on it came to my attention that you're causing "bad air" throughout the unit, making it difficult for others to breath at times. Your eviction process will be lengthy.
You have already avoided the attempts of the Coumadin agency to remove you. Coumadin was an agency that required too much time an oversight. Because of that, Lovanox has been employed. I am very pleased with its results so far. As your belongings have been moving out, the other residents have been complaining less frequently. It has been noted that the upper left thigh has been in less pain, and the fatigue you've been causing the entire left leg is subsiding. Subsequently, the whole community has been able to excersise in more comfort. I speak for the community when I say that we will all be in better spirits when you are gone.
I must take some of the blame for failing to screen you out as a renter from the start. Illness previous to your arrival prevented me from my normal activities, thereby preventing me from fully screening your application. I did not notice that you wanted not only the leg space, you also wanted to invade the lungs. I also note now that Mr Cancer was one of your references. From here on, I will be more active, and I will screen my applications more thoroughly.
Mr Clot, you have caused me to realize the importance of taking more active management of my prized rental property. Joy will abound in this property more so after you have left than before you arrived. The landlord did not realize just how good he had it with the previous renters. I have also enlisted the help of Mr Father and Mrs Mother to help me care better for the property while you are here. They are doing a superb job.
Your landlord,
Adam
You have already avoided the attempts of the Coumadin agency to remove you. Coumadin was an agency that required too much time an oversight. Because of that, Lovanox has been employed. I am very pleased with its results so far. As your belongings have been moving out, the other residents have been complaining less frequently. It has been noted that the upper left thigh has been in less pain, and the fatigue you've been causing the entire left leg is subsiding. Subsequently, the whole community has been able to excersise in more comfort. I speak for the community when I say that we will all be in better spirits when you are gone.
I must take some of the blame for failing to screen you out as a renter from the start. Illness previous to your arrival prevented me from my normal activities, thereby preventing me from fully screening your application. I did not notice that you wanted not only the leg space, you also wanted to invade the lungs. I also note now that Mr Cancer was one of your references. From here on, I will be more active, and I will screen my applications more thoroughly.
Mr Clot, you have caused me to realize the importance of taking more active management of my prized rental property. Joy will abound in this property more so after you have left than before you arrived. The landlord did not realize just how good he had it with the previous renters. I have also enlisted the help of Mr Father and Mrs Mother to help me care better for the property while you are here. They are doing a superb job.
Your landlord,
Adam
Sunday, October 9, 2011
Birthday
Another birthday has been had. This was a surprise to me. The pain, aching, hospitalizations, fatigue, dizziness of the past several weeks has made that rather questionable -- or at least the enjoyability of another birthday. But this makes 31! Not exactly a milestone to most. Not a desirable age to most. Generally, just not something to write about. Well, I am writing about it, because for me, it's significant, as you all see.
I gather I had over 30 people at the homestead during Saturday evening. Thank you to everyone who came, even when you did wear me out to the point that I'd rather have been in bed. I really enjoyed your company, thought, and chocolate. Just so you know, I have enough chocolate to last a lifetime while still opening a little streetside market. I love it all and will certainly try it. Does anyone have any favorite hats? Thank you all for your true care and love.
Sunday is an energizing day. Today I got some sitting in the sun, reading some great books, and hearing some intense sermons making the gospel much more meaningful to the suffering body. The gospel is so much sweeter in suffering as perhaps you've experienced.
I gather I had over 30 people at the homestead during Saturday evening. Thank you to everyone who came, even when you did wear me out to the point that I'd rather have been in bed. I really enjoyed your company, thought, and chocolate. Just so you know, I have enough chocolate to last a lifetime while still opening a little streetside market. I love it all and will certainly try it. Does anyone have any favorite hats? Thank you all for your true care and love.
Sunday is an energizing day. Today I got some sitting in the sun, reading some great books, and hearing some intense sermons making the gospel much more meaningful to the suffering body. The gospel is so much sweeter in suffering as perhaps you've experienced.
Tuesday, October 4, 2011
Blahhhh
Lots has gone on, but I feel I have little to say. I just got out of hospital on Saturday. I was in for a bloodclot in my leg. The doctors and nurses keep calling it a DVT. I don't know why they don't just speak in human terms. Once again, I had lots of visitors -- 10 at one time in an evening. This time, bloodclot is actually painful, which is a first. I had pain in my upper left leg for several days. Finally, swelling ensued. The doctor received a late evening call and finally told me to get meself to the ER, which I promtly did. I was admitted at 3AM, and we all got a few hours of sleep before breakfast came as a great disturbance.
Lots of narration to do, but I don't really want to. Nor do I think it particularly necessary. I haven't been feeling up to narrating for a while. So I'll bypass that and maybe come back to it in a while. I think I've had much to learn over the past couple setbacks. As you know, I've had a shoulder fracture which required my arm be in minimal use for the past month. Also, the aformentioned bloodclot in the left leg. What does all this mean? I've been feeling pretty good up to this point. So now there's some discomfort and temporary disability.
What have I learned? First, it's possible to get by with one arm (although the second hand has been available to help out on certain things, so one armed, two-handed). Second, it is possible to get around on one working leg, while hobbling around on the second. What makes it possible? Two parents who take care of my every need! Wow! Thanks to both Mom and Dad! I'm working on getting back to both feet and both arms. I'm quite excited. I have learned all the things that I cannot do without arm and leg. I will much appreciate having full ability again as I have a bit of understanding what it's like to have some minor disabilities. Yesterday I found it more than a bit fatiguing to make it from car to blood lab for some routine testing.
Some other things I should be learning but don't think I am? Patience -- when I want something and can't get it immidiately for myself; Humility -- none of the good or bad is from myself, etc. I really should go into that more (no, I'm not a fatalist); oh so many other things.
Now that I think about it, there's so much to say. I've been working on this for a while and I'm easily distracted by things I think are more fun, so it takes me a lot more time to do this than you might think it should. But for now, I'm finished. Let me know if there's something particular you want me to write on -- an assignment, if you will. That will make for a good challenge for me! (of course I might not do it)
Lots of narration to do, but I don't really want to. Nor do I think it particularly necessary. I haven't been feeling up to narrating for a while. So I'll bypass that and maybe come back to it in a while. I think I've had much to learn over the past couple setbacks. As you know, I've had a shoulder fracture which required my arm be in minimal use for the past month. Also, the aformentioned bloodclot in the left leg. What does all this mean? I've been feeling pretty good up to this point. So now there's some discomfort and temporary disability.
What have I learned? First, it's possible to get by with one arm (although the second hand has been available to help out on certain things, so one armed, two-handed). Second, it is possible to get around on one working leg, while hobbling around on the second. What makes it possible? Two parents who take care of my every need! Wow! Thanks to both Mom and Dad! I'm working on getting back to both feet and both arms. I'm quite excited. I have learned all the things that I cannot do without arm and leg. I will much appreciate having full ability again as I have a bit of understanding what it's like to have some minor disabilities. Yesterday I found it more than a bit fatiguing to make it from car to blood lab for some routine testing.
Some other things I should be learning but don't think I am? Patience -- when I want something and can't get it immidiately for myself; Humility -- none of the good or bad is from myself, etc. I really should go into that more (no, I'm not a fatalist); oh so many other things.
Now that I think about it, there's so much to say. I've been working on this for a while and I'm easily distracted by things I think are more fun, so it takes me a lot more time to do this than you might think it should. But for now, I'm finished. Let me know if there's something particular you want me to write on -- an assignment, if you will. That will make for a good challenge for me! (of course I might not do it)
Thanks
I have many things to write about. First, I want to make note to all who have commented on my postings, how much I appreciate your comments, long or short. I don't comment on any of them or I'd have to comment on all of them. So I'd certainly leave some out and assuredly hurt some feelings. So thanks to all. Also, thanks to all who pray, visit, think of me, or think of thinking of me. I know how difficult it is to remember all my friends who are hurting, in need, going through something difficult, rejoicing over something, or otherwise in need of thoughts and prayers. So I can't blame anyone.
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